Friday, May 29, 2009

My EDS & POTS Story

Hi, everyone! All my fellow EDSers, friends, family and those interested in learning more about EDS, welcome back. :) Thank you for your patience, as it has been some time getting this blog up and running, as well as getting myself on a path where I am able to put time and effort into it.

It has been a long couple of years, and a long 2009 so far. My health has been poor, and I am sure you are all in the same boat, for the most part. It seems with EDS there is a constant battle of trying to cope with so many things simultaneously, that I don't have a day where I am ever at 100%. Most days, for me, I am dealing with many random issues, and they all take a toll on me. From dislocations and subluxations, to IBS or gastrointestinal issues, to migraines, achy joints, shooting and stabbing pains, bursitis, TMJ, the chronic muscle spasms by my shoulder blades, the irritating pain that accompanies every step I take, the sore fingers, the constant fatigue, irritability, tachycardia, blood pressure dropping every time I move, lack of energy period, blah blah blah....we all know the symptoms. And, for me, they have consumed my life as of late. Especially the last couple of years.

First, I think it will be beneficial to give you a bit of background on me and my journey. My entire life I have dealt with the physical and emotional symptoms of EDS. Whether it was dislocating my knees during dance practice, staying home from school with chronic migraines, having low energy compared to my peers, feeling my heart race every time I took a shower - I had all of these strange symptoms and knew there was something 'wrong' with me from a very young age. My family didn't think much of it, they just knew I was always sick with something, and I was teased for being a hypochondriac. My doctors told me a range of things could explain my symptoms, from growing pains, to stress, to psychological problems. Mostly, I was told there was nothing wrong with me. I knew that wasn't the case.

With every year came new symptoms or progressive symptoms. Finally, in 2004, I decided enough was enough and I wasn't going to take 'no' for an answer. I set out to find any doctor that would listen, and after a long list and a lot of office visits, I ended up in Dr. Ashu Mehta's office in Anne Arundel Co., Maryland. He is a rheumatologist, so down-to-earth and calming, and was not only willing to look at my case with open eyes and open ears, but after just 5 minutes in his office, he was clearing his desk and breaking out books trying to get to the bottom of my problems and get me a diagnosis. He recognized immediately that there was something wrong, and his first instincts told him that I had either Marfan's Syndrome or Ehlers-Danlos Syndrome. We broke out the medical books and he performed the beighton scale test on me to determine if I was a candidate for a hypermobility syndrome.

(see Beighton Score chart here: http://www.shoulderdoc.co.uk/article.asp?article=645)

I scored an 8 out of 9 on the chart, and possessed most of the major and minor criteria listed on the chart. This meant, for certain, that I was hypermobile. From there, Dr. Mehta sent me to the genetics clinic at Johns Hopkins University, one of the leading genetics clinics in the country, and one of the only places that focuses on such connective tissue disorders. This was 2005, and I was seen in the genetics department headed by Dr. Levy. During my time at JHU, I was seen by a team of doctors, residents and specialists. I was stripped down to my birthday suit and was poked, prodded, measured, scanned, EKG, echocardiogram, and brought into a room where my diagnosis was confirmed: Ehlers-Danlos Syndrome, Type 3/Hypermobility Type. All of the other types of EDS, the diagnosis is a bit more specific in that they have narrowed the testing down to a specific gene. They have not yet figured this out for type 3, and therefore, they diagnose off of clinical evaluations, family history, et al. With my diagnosis in hand, I set out to figure out the best course of action. Physical therapy, drugs, doctors and more doctors....The diagnosis was a long time coming, and finally gave me some answers, and also many more questions. This was just the beginning of the journey to where I am today.

In the next few years, I proceeded to follow my heart and attempt some very mild tries at holistic healing/alternative therapy. I also listened to my head, which landed me in specialists' offices many days out of each month. I tried to mix the alternative therapies (which I was so 'green' to) and take the meds that the doctors were shoving down my throat as well. I did several years of physical therapy, which did not help all that much. I slowly got worse as the months turned to years. I went from being in pain only some of the time, to being in pain all of the time. I went from being a flight attendant, to not even being able to work a desk job because of the pain, joint issues, etc. There was even talk of injecting my knees with chicken cartilage, which to a vegan like me, was not an option. I went off of the medicines, which weren't working, and went on new ones. I wore the braces, I tried the creams, I changed my diet a bit. Between the years of 2007 and 2009, at present, I have seen physical therapists, pain specialists, rheumatologists, orthopedic surgeons, general doctors, endocrinologists, cardiologists, psychiatrists, psychologists, counselors, and then some. I have spent so much money on doctors and medicines, and thankfully, for most of these two years I had decent medical insurance, which helped immensely. But, through all of this, the doctors still have not found a place where I am comfortable and my pain is under control, they haven't found a way to help that is anything worth mentioning. The medicines just don't help. My liver is probably terribly damaged from being 27 and having taken so many painkillers all these years. I haven't found solace in my treatments as of yet.

In addition to the EDS, in 2008 I was diagnosed with POTS (postural orthostatic tachycardia syndrome). For years, I have had 'problems' with my heart. For what seemed to be no apparent reason, at random times, my heart would beat wildly fast, as though it were going to explode out of my chest. This would happen a lot when I was showering, doing physical activity, etc., but over the last couple of years it started happening even during my down time. I would be watching TV, reading a book, doing some super light gardening, and all of a sudden my heart would race like it was in a marathon. I am definitely not a marathon runner. While this may sound inconsequential, there was a lot that was happening because of it. First, I would become very dizzy. It would become hard to breath. And, it would wear me out for hours. An episode would last for a couple of minutes, but leave me tired and out of breath, feeling as though I just ran 10 miles, for the rest of the day. It was getting so bad, that I would pass out upon standing, my vision was blurry. As the years went on, this became worse and worse, to the point it was affecting my ability to work, stand for any length of time (concerts, amusement parks, even just the line at the grocery store), my ability to drive, etc.

The POTS has become more of a nuisance than the EDS itself. I have chronic pain from the EDS, but I can't even stand up with the POTS. After pressing the doctors again to figure this problem out, I was put on a heart monitor for a month, 24/7. They agreed that I had severe tachycardia, but no arrhythmia. The cardiologists sent me to get a tilt-table test at Eastern Virginia Medical School's heart hospital in Norfolk, VA. They are the only heart-only hospital in the country, and are connected with EVMS' other facilities, which have been a big help to me over the last couple of years.

During the tilt table test, they did just that - put me on a table, strapped me to it, hooked me up to monitors and raised the table to an 80 degree angle, basically putting me in the position that any person would be in if they did something as simple as stand up. Then, they monitored me and took vitals every 5 minutes. It was obvious right away that my vitals were not where they were supposed to be. I became dizzy. My heart was tachycardic, racing like crazy. My blood pressure was dropping. Everything was getting blurry. I was feeling nauseous. And then, boom: BLACK. I passed out. They dropped the table back down, injected me with something to bring me to consciousness and told me the results: POSITIVE. Just from standing up, simply going from a laying position to a standing position, my blood pressure dropped to 50/30 and my heart rate went up to 173. Yikes!

In the end, I was told I have POTS. It is a side condition that some people with EDS develop. It is likely caused by the stretchiness of blood vessels, lacking the proper connective tissue structure they should have, therefore they are unable to squeeze and push blood throughout the body when I move. Normal people's blood vessels are constantly compressing and decompressing in order to compensate one's movements. Mine don't function properly. Ugh! With this diagnosis, after several trials, my endocrinologist was able to find me some medicines that helped a bit. They didn't make things perfect, but they brought me from a zero out of ten, to perhaps a four out of ten on the manageability scale. In addition to taking those, I have to be very careful to read my body's signals, never stand for long periods (take my wheelchair to events where there is a lot of walking or standing), wear compression stockings all of the time (my granny stockings!), and take it easy.

For more on POTS, see my in-depth post on it by clicking here.

With the EDS and POTS taking up the physical side of things, the bipolar disorder and PTSD take up the emotional/mental side of things. I was misdiagnosed in 2007 with having severe depression, but was properly diagnosed later in 2007 with bipolar disorder, mixed episode type. Also, from years of physical, emotional and sexual abuse, I have PTSD (post traumatic stress disorder), and I have only actually been attempting to deal with it for the last two years. I have been on a whirlwind of medicines for the bipolar disorder, as well as to help with the PTSD. I am open about this on my blog for two reasons: I want more people to be aware of mental illnesses and help get rid of the stigmas that come with them, and I want to share my story in case it helps anyone else deal with any of these horrible illnesses. I don't mind talking about them if they can help someone else in any way.

With all of this said, I am here, in mid-2009, at a turning point in my life. I lost my health insurance in the beginning of 2009. This was significant - not only did I lose the ability to see the doctors I need to, but I also lost the ability to pay for my prescriptions. I have been fighting a disability case since the beginning of 2008. I was denied twice, and now am in appeals with an attorney, hoping to get the judge to agree that with the combination of EDS, POTS, BPD, and PTSD, it is quite impossible for me to be able to work enough to make ends meet. The POTS alone should be reason enough, and my doctors have all documented and agree with this - though, the federal government and the state of Virginia have yet to agree. I will hopefully get in front on a judge in the fall of 2009. Until then, I am unable to work full time, and if I were to attempt to, I would disqualify my disability case. So, for now, I have no full-time income, no health insurance, and no ability to treat my illnesses conventionally.

Along with finding out all of the health problems I have over the last few years, I have also been on a great journey to find 'me.' I have become comfortable with myself, at 27, and accepted who I am. A bit left of center, a bit colorful, and a lot of kind-heart and passion. I want to meld who I am inside, with the way I look at my body and mind, the way I focus on my health care, etc. This seems to be the perfect opportunity to do so. I am in a place where I have no choice but to make some changes and really focus on making myself a better, more healthy life. I have had some ‘revelations,’ if you will, the last few weeks. I am taking control of my body and mind – all that they are and all that they aren’t. The doctors have yet to find ways that really help, and the meds are too expensive. The total cost, without health insurance, for the four major medicines I was on, not including vitamins, etc., is now over $2,000 a month. And most of them aren't at the right levels or working enough to make a difference. The only one that was helping, for POTS, is $900 a month by itself. I have to deal simultaneously with the EDS, POTS and bipolar disorder. I am now taking back my body, getting control of it in a way I haven’t ever done. I have spent hours and hours researching alternative treatments, eastern medicines, supplements, diet changes…this list goes on….and, I decided I am going to take the plunge and just dive right on in.

I am writing about all of this to help those of you who are looking for a more natural way to treat your EDS. I will be writing about all of the things I try, and what results I am getting out of them. Perhaps, you too, will one day take a more holistic approach to your health, or maybe even just find a certain alternative medicine that helps ease the joint aches or the IBS. So, please join me on my journey to a better body, mind and spirit. If you have any questions, please just email me.

I will make a great attempt at keeping up with this, and making sure to note each new thing I try. For now, I am slowly going off of the medicines I am on, and dealing with the withdrawals from them. I will be doing this for another week or so, and then I am going to do a fast. I will write about all of this as it is going on - and you can follow if you are interested! After my fast, I will start my new 'medicines'...lots of herbs, supplements, diet changes, etc. I will write about all of these as well, and go into detail about the info I find and the results I see, good and bad. (And, the disclaimer: I am not a doctor, and do not recommend you do anything I do unless you are under the supervised care of your physician. This goes for this post, and any other posts on my site.)

To each of you with EDS, may you have a pain-free weekend, or as pain-free as possible. Love and peace to everyone on this beautiful planet. And, thank you for being patient while I situated myself the last couple of months. Now that I am on my new journey, I hope you will join me.


You may also be interested in the following posts:
  1. My Symptoms
  2. Postural Orthostatic Tachycardia Syndrome (POTS)

10/27/2011
***Update***

Over two years have passed since this post was written, and it has been a long and arduous journey. I have continued to write posts, and as you have seen, have gone back to trying a variety of treatment options including the traditional western medicines that I had stopped taking for various reasons. I currently take prescription drugs, which seems to be the only way to keep the pain at bay and keep somewhat sane, while also filling my body with good foods and supplements to make sure I am not solely a toxic wasteland. I will continue to keep an updated list on the blog of what I take and different foods/therapies/supplements/drugs that I try. Thanks for following along and for all of your encouragement.

Lastly, I want to stress acceptance. I accept all of my fellow friends with invisible illnesses, regardless of what treatment routes you take. I do not judge you for taking drugs over holistic medicine, or for using diet instead of pain killers to treat your pain. Every person has to find what works for them. I would only hope all of you feel the same about me and my path, whether or not you agree with it. And, as an ever-changing and growing person, I am always open to suggestions or questions, so long as they are respectful. It's such a beautiful thing when we can all work together to help each other find solutions.

With all my love,

xo
dani

Artwork by Rachael Brady

74 comments:

Megan said...

oh my god... I sat here reading this mouth agape because you just described my life. Just this Tuesday I was diagnosed with EDS Hypermobility type and I was doing some research on the relation to EDS and the syncope episodes I've been having since I was 3. I was also diagnosed with a enlarged aortic root and I believe tachycadia syndrome at the cardiologist last week. If I wasn't officially diagnosed with that then I need to go back because what you just described has been happening to me for the past 2 years. I also have bi-polar disorder, have symptoms of hypoglycemia, vegan, trying to find hollistic approaches to my daily issues and ever since I was young I also knew something was up with me. From age 10 I remember telling my mom I had some type of disease where there is something always wrong with you. I'm seriously in shock. I will be bookmarking you and joining you in your journey to deal with the stress and strain of all these disorders. It was AMAZING to come across your blog.

Vegan Danielle Davis said...

WOW, Megan! I am just as shocked as you - to find someone with EDS, bipolar disorder, and vegan to boot! Whoa! Nice to meet you! Please do join me - subscribing via email helps me, if you are interested - that way I can send out reminders to keep you up-to-date. Hopefully in my journey, I can come across some great things that will help us both! :) I UNDERSTAND everything you described. The POTS (postural orthostatic tachycardia syndrome) diagnosis was a biggie for me - the geneticist wouldn't diagnose it - and therefore, I was left untreated for several years until I pressed my cardiologist to send me for testing. The endocrinologist is the one that 'treats' me for it now. Though, as I have mentioned, I am no longer taking the drugs that I was on - just using more natural ways and suffering through it. But, it helps me know my limits. I know I am not crazy when I am worn out, can't stand up, need my wheelchair, my heart is pounding...no one looks at me anymore like I am just 'being a hypochondriac' -- the people I am close to that know me well, anyway! :) Welcome to my blog, and feel free to comment on anything! I will do my best to respond to all comments. Great to meet you!!

Matt said...

Hello there my name is Matt i live in Kentucky and i have Ehlers Danlos Syndrome type 6b. Which is characterized by blue sclera and fragile\britol cornea, but my lysyl hydroxylase levels are normal. I am 25 years old and have dealt with EDS all my life. I just found out this year 2009 that my EDS was this newer subtype my genetics dr. told me they could probably name it after me because its extremely rare to have normal levels of the supposed inactive enzyme an still have the disease. I've had multiple problems since i was a baby from being born with dislocated hips to having multiple corneal ruptures and repairs. I've developed glaucoma over the years and have lost most of my vision in my right eye and half in my left eye. I am 25 now and i to suffer from pain on a day to day basis in all my joints, as well as eye pain and visual problems.My joints are extremly lax an sometimes my fingers will pop in an outta place while im playing guitar. My hips an knee an ankles crack a lot an i get so stiff an sore after a day of being out on the lake fishing. Also i suffer from the digestive problems you talked about i have a lot of heartburn an struggle with constipation at times. My joints ache almost constantly and i've twisted my right ankle numerous times over the years. I have an extremely weak back an pull muscles constantly doing the littlest things. I just want to let you know your not a lone out there that im here with ya as well but my advice is to enjoy each day no matter how crappy we may feel there is always someone out there who is worse. I am thankful for everything my life has given me an able to do. So keep up the good fight an remember with GOD all things are possible.

Vegan Danielle Davis said...

@Matt:
hi - nice to meet you! i am glad you found the blog. i am sorry to hear about your EDS - wow, yes, you certainly have a rare type! i think you are the first person i have talked to with type 6, let alone 6b. i am sorry to hear about your struggles, but i am so happy to read that you still have such a positive outlook! what an inspiration!

the only problems i have had with my eyes are the reading glasses, night vision problems and the cataract in my right eye. what you have gone through sounds painful and very tough. i am sorry. i certainly can understand the joint pain, stiffness, hypermobility, etc. i think all of us EDSers are in for years of pain - and we just have to find ways to manage it that work for us. one day at a time!

for your fingers, have you tried ring splints, even just the plastic kind? they seem to help me. i fiddle with a guitar every once in a while, they really help - they also help with typing and writing.

as for the digestion problems, my new diet has really helped a ton. feel free to ask if you have any questions. i am going to try to post some recipes and things too. my GI tract feels better than it has in years. (there is a posting on what i am eating on my blog.)

you, too, are not alone! thank you for sharing - please feel free to comment often and keep in touch. we are all in this together. :)

be well!

Christa said...

I saw Dr. Levy too!!!! Personally I found him a bit too cold... and made me feel more like a statistic than a person. I LOVE Dr. Francomano now as my geneticist at GBMC... but again a drive to Baltimore.

elastigirl said...

wow, hey danielle. i've enjoyed your blog very much. i'm a 28 year old health conscious flight attendant/aspiring medical professional. since i was 16, i've wondered why i don't have the same energy level as my peers, and why my upper back, shoulders, neck and head are chronically in pain that can cause me to miss school, work, and social happenings. just two months ago i got my EDS hypermobility diagnosis.

it is nice to have a path of treatment and recommendations after a decade of well-meaning clinicians blindly and inappropriately treating my chronic pain and fatigue. my choices, too, haven't helped and sometimes exacerbated my EDS. i've always held physically demanding jobs in healthcare and flying (you flew too!) however, my body is catching up to me. honestly, i've secretly known for a few years that i am never going to be a full time employee of anything. now i know why! in exercise and meditation, i used my flexibility as an advantage. little did i know all those yoga and pilates positions i bent into so beautifully only subluxed my joints and strained my muscles! the very activities i enjoyed as a way to manage pain were actually causing more pain. well, now i know.

in two days, i go to a new specialist to tackle another of my medical mysteries with a tilt table test. i shy away from self-diagnosis, but i have a sneaky suspicion that my years of palpitations, visual blackouts, orthostatic intolerance, nausea and migraines might land me with another new acronym: POTS.

so this fall has been an interesting time for me. i've known that i could not ignore my multitude of symptoms forever, but i did try to live and interact with family and friends as though i had no symptoms at all. after living that way for almost all of my twenties, i have a name to my symptoms and it feels OK to acknowledge them, to educate my loved ones and re-evaluate my life's goals so that they fit my body. what a relief!

i'm in the discovery phase of EDS, eagerly reading up and learning about my condition. i came across your blog from youtube. i'm starting to see that there is a wonderful support network of EDSers. i'm glad that you're out there spreading the word. i also applaud you on your holistic approach-- integrating western and traditional therapies to maintain your function and achieve your optimum health. i look forward to reading the evolution of what you find works well.

i wish you the best of health and as you say...we are not alone!

Kat Con said...

i'm 16, and have been diagnosed with hypermobility, and will hopefully get my fiinal diagnosis of EDS hypermobility type on the 26th. i also have bipolar, and PTSD, but have not been diagnosed with the tachycardia(yet). wow. your story amazed me. :)
-Kat.lyn Constance

Kat Con said...

oh, and i have that great combination with, also, alopecia totalis. yippee, lol. but, your blog is so great! i enjoyed reading this so greatly, thank you for posting. :)
-Katlyn Constance

diana w said...

thank you for sharing your story! my husband has ehlers danlos syndrome. some days are better for him than others, but he is doing the very best he can! he is amazing! sometimes i dont know how he gets through the day feeling the way he feels :0( i really appreciate you putting yourself out there. its comforting to know that there are other people out there going through what he is going through, and sharing suggestions on how to make life with EDS a little bit easier. thanks again for your updates. hope you have a great weekend :0)

Vegan Danielle Davis said...

@Christa - yes, I actually agree with you about Dr. Levy. Though, I am jealous you get to hear him speak at the conference!! :) Dr. Francomano sounds great, but not all the from Nevada, since I moved! Haha! Glad you have a good doc, though! :D

Vegan Danielle Davis said...

@Christa - I have mixed feelings about Glucosamine and Chonroitin. First of all, Glucosamine comes from shell fish. There are vegan versions on the market, but the levels and the bioavailability are not as great in the synthetics. Second, I have had several doctors, holistic and western med, give me different opinions on the two (combined). Some say it might help, some say it won't, some say it just helps with pain, others say it doesn't....I have read studies saying both too. Also, I have taken it, for a while I took it faithfully for the duration of one year, and I didn't notice a difference. I am not sold on it, and perhaps that is the synthetic part being a problem, but perhaps it is just that they don't work (or work for me)? I toy with taking them again, but I have to allot what meds/supplements I am buying, and which are breaking the bank. It isn't one I am including right now.

Vegan Danielle Davis said...

@elastigirl - I am so thrilled to meet you on here - and I can't believe your story is so similar to mine! Yep, when I realized there was something so wrong that I would not be flying for much longer, I knew I had to take action and get in for Dx. Did you officially get your POTS 'label'? How is your health these days? Any relief with new meds/treatments? I am still doing a ton of trial and error, and all around a tight budget. Keep reading and I will keep posting. I would love for your comments to appear on my posts as well, I am curious how you are! Keep your chin up - and like you said, always remember that you are not alone! :) Much love!

Vegan Danielle Davis said...

@Katlyn Constance - thank you for your sweet comments! You are certainly not alone! There are a ton of us out here that know exactly what it is like to deal with the pain and struggles. Just keep the hope alive and take one day at a time! :) Much love, peace, and happiness, Kat! Keep commenting! :)

Vegan Danielle Davis said...

@Diana W - Thank you for your nice comments! I am inspired when I hear stories like yours, about your husband's strength - you sound like a great partner to have - being so devoted and loving him through the ups and downs that come with EDS. Please give him a hug from a fellow bendy!

Jean said...

I just thought I'd let you know that not only was your blog an inspiration for me to get myself diagnosed with Ehlers Danlos (doctor always said "why get diagnosed, it doesn't change the fact that nothing can be done for it." yeah, except I now have proof! Thanks, doc), but also to follow my heart and become vegan.

Again, thank you.

Anonymous said...

My name is David from Mexico ( North)close to the texas border I am a nutricion doctor and have been investigating about Ehlers-Danlos Syndrome and just found that it is a nutritional unbalance but itis not corrected by a balanced diet. The person should be treated using the metebolic corrective technic to force the body to correct the unbalance. I habe been treating a girl for EDS with very goods results, the skin is geting normal, her wounds are healing and she is geting a normal girl. It is very possible that this treatment can help you. I am very possitive on this. If you have some questions, I am glad to answer them.

Anonymous said...

David from mexico. Danielle. I forgot my e-mail if any body has some questions about EDS. dakely61@hotmail.com. sorry.

Stacey said...

Hi Danielle,
I'm sitting here just trying to think of where to begin...I've been skimming through your old blog entries for a while now and I can't believe how familiar it all seems. I've been doing research for a little while now and went to the doctor 2 weeks ago to talk about EDS. Of course she wants to explore all options (that's fine, she's a great doctor, I wouldn't expect any less). But preliminary tests are coming back negative (no lupus, no rheumatoid arthritis...things you can easily see in blood tests). She's sending me to a rheumatologist (along with my test results) next month. She wants me to see someone who knows more about hypermobility and joint pain.
But I can't help thinking this is all more than just a coincidence. I think the answer I've been looking for all my life might actually be in front of my face now. I'm not extremely symptomatic in a way that freaks people out yet...I don't have major dislocations just by sneezing or reaching for a glass. I actually have very good muscle tone and strength from being very active all my life, which is probably doing my joints a lot of good for now. But it's painful. All the time. And I notice "slipping" and things sliding around where they shouldn't be. I dislocate my fingers a lot at work (I work in a nursing home right now, currently trying to find a new job, because I'm in so much pain I just don't enjoy my job like I used to). A resident dislocated my thumb one night and it scared her. I had to lie to her and tell her nothing was wrong and that it was just a popping joint...it hurt like hell.
I was always told as a kid to suck it up, toughen up, stop complaining, that I was a hypochondriac, etc, because I was always complaining about something or going to the doctor. So I stopped complaining. But now I know why these things are happening. I knew there was something wrong all along. The fact that my nearsightedness is EXTREME (common), the fact that I'm 23 and have a hiatal hernia (also fairly common) with IBS and slow GI motility, the way every single one of my joints crack and pop when I move, the way nothing feels secure in my body, always loose, my clumsiness, the falling, the pain....it's all connected. I know that there's little that can be done about it on bad days. Especially for someone who hates pumping her body full of chemicals (I'm not a vegan, I just know what happens when you take too many drugs long term, there are side effects to everything). But having an answer...how therapeutic would that be right now as I sit here with my hip locked up in a position that I don't think I'll be able to move from for an hour...?

Now my only question is...where do I go from here? I've been in patient care all my life (since I was 15). I don't know what kind of job I would possibly like to do that isn't patient care and that would be kind to my joints. I'm certain there's an answer...I just haven't found it yet.

Thank you so much for sharing your experiences. It's so helpful and so great to know that someone else out there is going through the same thing and can share experiences.

Scott and Karin said...

I, too, feel like I am reading my story on your website. I've been sick for 18 months this week and just recently learned that I have EDS type III. I also have POTS, inappropriate sinus tachycardia, autonomic nervous system disorder (slight), and am currently waiting for genetics test results to come back. Something is causing my amino acids to be rediculously low, but we are still searching for the cause. I found your blog when I was googling rib dysfunction, as two of my ribs slipped out of place this week for no reason. What a wake-up call to the world of EDS! Thank you for your blog, I can't wait to read more of the entries. Karin

Kayla Miller said...

Just like many...I sat here with wide eyes and an open mouth while reading your intro to your blog. You described my entire life as closely as you possibly could without even knowing me :) !!

I have EDS Type II (Classic Type), POTS (Postural Orthostatic Tachycardia Syndrome), and psychological issues as well. I suffer from horrible migraines 24/7, I am constantly fatigued, I pass out frequently, I always manage to somehow dislocate/subluxate my joints, and the list goes on as you know! My tilt table test was the exact same as yours as well...I passed out and they were like...POSITIVE!! Haha good times huh?

But anyways, I'm 18 and I went until age 12 without a diagnosis. Many of you are in the same boat and I am sorry for everyone who had to go so many years with everyone telling you that nothing was wrong with you. We are all in this together and it is amazing to read so many stories of those who are exactly like me :)

I have had so many surgeries over the years. Spinal fusion, heart surgery, 4 surgeries on my feet, inguinal hernia surgery, etc. I take more meds than all of my grandparents combined, which I'm sure everyone understands once again.

Anyone feel free to get a hold of me through e-mail or reply to this post...it always feels great to get to know someone like me. I've gone 18 years and only met one other person who has EDS, so it is great to talk to someone who understands. my e-mail is millkayl@mail.gvsu.edu

I wish the best for you all, and everyone always remember to just hang in there-even when it may seem impossible!

Kayla

Anonymous said...

Psychiatric. Psychological dysfunction, including depression, anxiety, and low self-confidence, is more common in persons with EDS than in controls [Hagberg et al 2004], especially among those with greater fatigue [Voermans et al 2009].

Dear Daniel,

Thank you for sharing your life with the public, something I find really difficult to do, or even share with family or loved ones. I always feel I need to protect them from my constant agony. You have described my life in many ways, I have been diagnosed by many doctors in The UK, I EDS Type III and II, I have ulcerative gastritis, IBS, POTS, Chronic pain, dysmenorrhea, insomnia, ME, hypoglycemia, frybromialgia and Had PTSD a few years ago, something I have found difficult to cope with since then.

My life has been challenged more psychologically because I had a pretty much normal life two years ago and I just don’t know how my future will be now, it is very scary. I guess one can say I am not used to being ill, but then again who is?

I am currently being treated at Breakspear hospital, I very much recommend this place to anyone living in the UK.
http://www.breakspearmedical.com/
It is a bit expensive, I have already spent more than £2000 but you can also try to get funded by the Nhs in the UK.

They found I am tired because I am still fighting a virus EBNA Type, I had glandular fever a few years ago and have been tested for XMRV virus; I also have an intestinal infection and currently taking antibiotics for it. I have deficiencies in vitamins essential to my nervous system. This is why I get depressed and tired, just when you think all is in your head, you realise there is more to that. For this I am taking infusions/ trasnfusions of vitamins and minerals/ substances that my body does not make or absorb from food. It is possible that you have similar issues so I recommend you get tested thoroughly on an intestinal permeability profile, vitamins profile, essential fatty acids and red cell profile :) .

I also have low levels of ATP and Magnesium and my body cant make easily new mt-ATP on increased energy demand.

http://wiki.answers.com/Q/What_is_the_role_of_ATP_in_the_human_body

Tips that might help,
For tachycardia POTS , I take Miodrine 3 times a day, it works and I get them sent all the way from Germany, the German name is Gutron Tabletten.

For Pain I take Gabapentin, very good but they make you spaced out, I was on a heavy dosage of 2000MG but you can reduce it to pain needs.

For other muscular pain and periods, Mefenamic acid minimum 500mg 3 times a day.

For IBS I take Omeprazole, ask your doctor on this…

Unfortunately for EDS there is not a magic pill but being around people who care for you and love you helps to deal with all the physical pain. I try to stay away from negative or judgmental people; a positive mind eases any pain :).
I hope you all get better.
P.S Sorry for any grammatical errors, I am so very tired and my concentration is not good at this time ;)
Natalia

Anonymous said...

Psychiatric. Psychological dysfunction, including depression, anxiety, and low self-confidence, is more common in persons with EDS than in controls [Hagberg et al 2004], especially among those with greater fatigue [Voermans et al 2009].

Dear Daniel,
Thank you for sharing your life with the public, something I find really difficult to do, or even share with family or loved ones. I always feel I need to protect them from my constant agony. You have described my life in many ways, I have been diagnosed by many doctors in The UK, I EDS Type III and II, I have ulcerative gastritis, IBS, POTS, Chronic pain, dysmenorrhea, insomnia, ME, hypoglycemia, frybromialgia and Had PTSD a few years ago, something I have found difficult to cope with since then.

My life has been challenged more psychologically because I had a pretty much normal life two years ago and I just don’t know how my future will be now, it is very scary. I guess one can say I am not used to being ill, but then again who is? I am currently being treated at Breakspear hospital, I very much recommend this place to anyone living in the UK.
http://www.breakspearmedical.com/
It is a bit expensive, I have already spent more than £2000 but you can also try to get funded by the Nhs in the UK.

They found I am tired because I am still fighting a virus EBNA Type, I had glandular fever a few years ago and have been tested for XMRV virus; I also have an intestinal infection and currently taking antibiotics for it. I have deficiencies in vitamins essential to my nervous system. This is why I get depressed and tired, just when you think all is in your head, you realise there is more to that. For this I am taking infusions/ trasnfusions of vitamins and minerals/ substances that my body does not make or absorb from food. It is possible that you have similar issues so I recommend you get tested thoroughly on an intestinal permeability profile, vitamins profile, essential fatty acids and red cell profile :) .

I also have low levels of ATP and Magnesium and my body cant make easily new mt-ATP on increased energy demand.

http://wiki.answers.com/Q/What_is_the_role_of_ATP_in_the_human_body

Natalia
I hope you all get better.
P.S Sorry for any grammatical errors, I am so very tired and my concentration is not good at this time ;)

Anonymous said...

Danielle, and all of you other "EDSers" out there, Do you want some ***really exciting news***? Are you ready to try something that will ***really work*** to help you with your condition? I work with a company that has an all natural solution. If you're truly serious about getting ***real help***, respond to "Lili Whyte". Let me know how we can connect directly so I can tell you more!!!

pscheeler said...

It is such a good feeling that you're not alone.While I feel overwhelmed at times with my EDS, I read other's stories and relaize things could be much, much worse. I managed to complete medical school and be in family practice for 12 years. Then the symptoms of POTS took over. I have been in the ER or hospital over 400 times, primarily for unstable for blood pressure instability and chest pain.I have severe underlying hypertension, so it makes it difficult to manage when my BP sinks into the 60's,since overtreating the hypotension makes my BP go up into the 220's. I feel like a push-me, pull-you in Dr Doolittle. I told my internist I think I have Bipolar Hypertension, which brought on on a few chuckles. I have had 2 spinal fusions related to spodylolisthesis and scoliosis. Rather barbaric procedures! I also disocated my left ankle and fractured it in 4 places. I have have 4 hernia repairs amd a papcemaker implanted. Even though I am a medical professonal, I got the same reaction as many of you- " Why go through the process of diagnosis when we can't fix this?". The major reason for me is that if I don't have a diagnosis, I get the same reaction as most of you- that I am a hypochondriac, or have Boderline Persona lity, and am seeking medical attention for secondary gain. It is as though the ER docs feel that I am having an enjoyable time sitting and waiting for 4 or 5 hours just waiting to get some attention.I would really rather be on the other side of the stethoscope!
The worst part of EDS for me is that it is a dominant trait and I have passed it on to both of my daughters.My 18 year old is completely disabled and is restricted to sitting on the couch wAtching TV, gobbling down maximal doses of extended-release morphine and oxydone to do that. It is heart-breaking to watchining her be unable to fulfill her dreams as a very talented artist. At least I get to to practice medicine, even if it was was cut short.She has been in the ER 50 times in 9 months and also has the big D" for drug-seeker" painted on her porehead. I don't believe she is a durg-seeker, but rather a relief seeker. However, both og us get the "evil eye" whenever we arrive at the ER. Pain management is clearly not an ER management problem, but it it hard to know what eld to do with with a sobbing 18 yr. old when her outpatient managment strategy is clealy inadepuate. Unfortunately, her 16 yr. old sister is now developing milder symptome of EDS.
So for now I pray the my daughters develop ways of dealing with chronic pain, fatigue, and dizziness while being able to pusrue their life's dreams.As I said, I am thankful I was able to at least practice medicine for a time, and also went back bak to school for a Master's in Psychology to hopefully one day help thse like us whose medical conditions interfere with nebtal health. I did start a Health Psychology Group for a while, but was let got after another medical event.
Thsnkd for listening and take care all. Patti

terri said...

I am sat in tears reading all the nblogs I have felt ill for most of my life and actually wondered myself if it was all in my head I had a diagnosis of eds when I was 40 recently had an episode when my heart suddenly started to race and it lasted for moinutes I was alone and felt very frightened now I know what it probably was recently I am feeling really fatigued muscle fatigue after doing the simplest of things like combing my hair is unbelievable and the pain in my joints muscles neck and back is continuous, pressure on my skin and bones when my partner touches me is very often painful.I wake several times a night in pain just from lying down my shoulders partialy dislocate at night from lying on my side. Within minutes of eating a meal I can be doubled up in pain sending me running for the loo resulting in diorrhea There are so many other symptons I would be here all night listing them I have other medical conditions that have developed over time as well as having multiple allergies and some aut-immune disorders and asthma, I look completely normal and I am sure people must think I am a hypochondriac but now I know others are in the same boat. I must admit I am in a low place at the moment. but thank you every one for your stories I don't feel quite such a fraud or quite so alone now.


angel

Anonymous said...

When I was diagnosed with EDS I was also diagnosed with a mitochondrial disease. If you have symptoms that affect 3 or more organs, you should ask your geneticist about the possibility of a mito. disease. They are often genetic (though in my case it was caused by a mutated virus), and the top mito. specialist, Dr. Bruce Cohen, said there MAY be a link between EDS and mito. There isn't a cure for mito, but the treatment is high levels of specific supplements. Just thought I'd share that with everyone. Hang in there! Karin

terry said...

Hi its angel again just thought I would ask does anyone else get reddish bruises that just seem to spontaneously appear? I also et this weird shaky trembling feeling inside sometimes.
I am glad to have found this site I have been avoiding support groups or anything like that because I thought it would depress or frighten me but it is a great relief to be able to talk with people who understand what it is like to live with eds.

Angel

Anonymous said...

Nice to meet you, Danielle.
I am from Germany, 28 years old, I deal with severe depression and EDS.
What really makes me sad, is that you have to pay for your medicine and your insurance does not cover it. Could you please contact me via email, because I have a question, which I hesitate to ask here.
My mail is malventee@aol.com
Love, Astrid

sarah said...

Hi wow reading your blog is like reading my life story, Im from England and just about to turn 26. I was always ill as a child and noone could find out what was wrong with me, chronic miagranes, dislocating joints etc etc. At the age of 15 my bowel stopped working (we now know because of the EDS) but then they had no idea what it was and just kept pushing me from pillar to post, I went 3 years without opening my bowels, at the age of 18 i had a sacral nerve implant fitted which thankfully worked but noone ever found out what had caused it, i then got better and on with my life, then in 2009 i woke up one morning and felt like death everything hurt i couldnt stand without blacking out and was so ill, i was finally diagnosed with EDS and POTs thankfully my doctors are absolutly amazing and they have me on a load of medication including midrodine and octretide which has got the POTS under control which means i can now stand, you should maybe ask your doctors about this medication as it has saved my life, i am getting married this year and thanks to this medicine i will be able to walk down the isle. i still have to use a wheelchair for long distances and sticks for shorter but my quailty of life has been restored. I really hope things work out for you cause i know how awful this illness is, it has completly changed my life, im glad someone has taken the step to explain this very serve illness

Anonymous said...

I think all of us with POTS and EDS owe it to ourselves to be checked for a mitochondrial disorder (especially if we have symptoms that go beyond EDS and POTS). I go to the Cleveland Clinic in May of 2011 to be evaluated for MS and hopefully mito. It would have been nice to see Dr Bruce Cohen at the Cleveland Clinic, but he recently left the CC and moved to the Akron Children's Hospital in Akron, OH.

I think, even if you cannot talk your doctor into testing for mito, that you attempt to improve your symptoms by helping your body's mitochondria by increasing l-carnitine (if not by diet, then by supplements); taking supplements of vitamins B6, C, and E; selenium; and DHA.

Karin Bernard said...

In addition to the pervious post by "anonymous," if you have a suspected mito. disease (or low energy levels) then you might find creatine and CoQ10 helpful. I'm on about 10 different supplements, and these two have been the most helpful. I buy mine through vitacost.com, much more affordable than the shops near me (the NSI brand is good, according to one of my docs). Best of luck, anon, as you look into the mito. link! Keep in mind that there are new mito. types being discovered all the time, so even if your "official mito." tests are negative, you very well still could have it, if certain amino acids and vitamin levels are off.

Anonymous said...

hi has anyone had neck surgery that helped...my main pain is my neck!!! it is twisted! I also been told i have small bone erosions in my wrists...they think it's RA...is that normal with EDS? Thanks you

Andrew said...

Hi Danielle,

It was nice reading about you and EDS and how you went through life on a positive side.

By the way, I don't have EDS but I'm writing because someone I really cared for and loved has EDS. She is my girlfriend and was diagnosed with the Vascular Type 4 when she did her test at the age of 27.

I just want to let those who have EDS that, even with this condition, you should not brood and dwell in sorrow. My Peggy didn't... she lived her life to the fullest by doing God's will without the slightest complain. It's amazing how she can find strength to carry on and live her life as how God intended her to live.

She is very dedicated in what she does. She teaches children with Autism and she just loves her job. Although she bruised easily from the slightest knocks... she still find joy in what she's doing. She jokes about her condition and never ever felt sorrow for herself.

All I can say is that, she's one brave and strong fighter of her condition. She finally succumbbed to EDS at the age of 34 slightly more than a week ago.

Vegan Danielle Davis said...

@Andrew:

Thanks so much for sharing Peggy's story, she seems like she was such an amazing woman. I love hearing about people who take everything life gives them and are still able to stand strong and be a guiding light for others. I am so sorry for your loss. She was lucky to have so much support and love from you; I know for me, that love makes all the difference in the world. Many blessings and love to you and both of your families. Thanks, Peggy, for being such an inspiration.

Love & Light
xo
dani

Faust said...

Reading this was refreshing. It's odd that it is, but anyway. I suspect I have EDS. My orthopedic physiatrist diagnosed me with "benign joint hypermobility syndrome", aka, EDS hypermobility. I'm waiting to see my Rheumatologist in August. I currently deal with the great burden of neglect and judgement dished out by pretty much everyone I come in contact with. It's a horrible quality that humans can only show empathy to those who share similar characteristics or who have been in similar situations. I'm just struggling to find what I can do with my life. I too have Depression, and heart issues. I don't know if I have POTS (hopefully I don't) but I do frequently get tachycardia. I also have ADHD, which complicates things. I'm very glad that one of us is so strong. You truly are a testament to the human spirit. Never give up and keep us up-to-date!!

Anonymous said...

Hi my name is Zoe, i'm 16 and I was diagnosed with EDS Type III (hypermobility) when I was just $ years old. On top of that I was born with club foot, type 2, at 8 months old I was diagnosed with a diaphragmic hernia that I probably had since I was born, it was operated on but it returned again when I was a year old, causing my lung to collapse and resulted in me almost dying. At the age of 11 I was diagnosed with a severe mitral valve prolapse. It is believed that my heart condition is linked with my EDS. It is that bad that I take 50mg of atenelol everyday (more than the average adult with my problem) and it is only getting worse. I have been told that I may need a heart transplant soon.

This condition has played a major part of my life as has club foot as I had major surgery when I was 11 to try and correct it further and make the pain more bearable, it only partially worked. I am facing more surgery on one foot soon. It has not been easy to deal with and some research and some posts I have read have scared me. I've had to deal with this since I was a very small child, and it has not been easy but it has made me a very strong and confident person who can face the world head on, I have big ambitions and have defied what alot of doctors have said about me. I'm not supposed to be alive right now, or walking, I was never meant to walk but I showed the doctors and I'll keep showing them.

I was wondering if you could give me any information about infertility and pregnancies.

You amaze me :) Thank you :) x

Enya said...

It is amazing how similar our stories are. I have type III, others in my family have had the vascular form. It seems the more EDSers I talk with the more I realize we are all on similar journeys battling our personal dragons. God bless each and everyone of you for sharing and having the courage to continue fighting every hour of everyday. I am truly sorry for your loss Andrew. Thank you for sharing her story with us.

Hope you are well Danielle and that you are able to continue with this blog. Thank you for providing this website! {{HUGS}} ~Enya

Susan W said...

I just can't believe what I am reading here -- all my symptoms in one place for the first time in my life. My daughter was just diagnosed with EDS at the age of 22 and said, "Mom, you have it too!" I knew she was right.

The doctors have been trying to find out why I am so dizzy all the time -- now I understand why -- my blood vessels are too weak to pump enough blood. I am so tired of everyone thinking I am lazy, when I knew all along something was wrong!

Next I'll be seeing the doc and together we may finally have the answer to all my puzzling symptoms.

Susan

Anonymous said...

Hi my name is Sarah. I'm 14 years old and I also (like you) have type three EDS.

Maggie said...

Wow. I'm an avid Discovery Channel Mystery Diagnosis watcher; it was after watching an episode (apart of a marathon today) that I heard for the first time anything about EDS Hypermobility. Curious about learning more about it, and the silver splint rings the woman on TV wore, it was through the splint ring search that I came across your blog. It's been such a learning experience to read through your posts! I just wanted to tell you thank you for sharing the complexities of your life--I'll be staying tuned, and I hope for the best in your future. :)

agapenutrition said...

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Anonymous said...

I just found this site. Why does nobody post on it recently. Everybody sounds like my daughter.

Anonymous said...

I have only been diagnosed with POTS. I don't have joint mobility like I hear others have, although my son can contort his shoulders in ways I've seen in pictured of EDS patients. I have told him to stop doing this immediately as it can cause him damage. He seems healthy otherwise.
Anyway, I seem to get the most relief of chest pain and extreme tachycardia from birth control pills. My doctors say they don't know why this is so, but I simply need them in order to function. Thought that might be interesting to other readers here.
It is really important for us all to share our stories and the info we've come across! Thank you Danielle for running this blog!
Liz

Deb Cobb said...

Dani,
You must know your website is a wealth of valuable information. My daughter has been diagnosed with EDS and we are in need of type diagnosis. Living in Central Florida has made this difficult if not impossible. I am moving forward with attempting to make an appointment this summer at the Mayo Clinic in Jacksonville, FL. It seems they may have a team to assess types. I am wanting to possibly do a collagen test. As you well know I do not really want to slice into skin, but hopefully a biopic slice will be worth the healing period involved. I realized how serious this condition is for her when she had a bone spur removed by a hap-hazard ortho surgeon who did nothing but what he thought he was capable of doing. They removed the stitches too early and I dealt with a secondary infection and she is still not healing correct. Hopefully the team at Mayo Clinic can have some insight on healing this area. But anyways your website has enlightened me and I am sure others that this condition is a real challenge for those who have it.
EDS Mom Deb

Aimee McBride said...

Hi There - I just fell upon your site as I was looking for symptoms of EDS & natural supplements to take. I have to say that your list of supplements is extroardinary & so helpful. what a gift you are offering to others to share all your research & hard work to help others going thru the same thing!
I have just gotten back into taking supplements regularly as I had gotten away from them the last few years & your list is spot on from what I would think would be important even including ayurvedic supplements!
I'm wondering if someone could guide me as the type of doctor I should see to determine if I have EDS. I recently had surgery for a hysterectomy b/c I ended up w/ a severe prolapse uterus after just 1 child. They had to put my insides back together etc & the doc mentioned that I could possible have EDS although he wasn't sure at all. he just said my tissues are extremely stretchy inside when he was operating. However - I don't notice an extreme amt of hypermobility externally at least not for a yoga instructor. I actually feel quite stiff often.
I also have a history of back issues (scoliosis/spina bifida etc). was diagnosed w/ chrohnes disease but have gotten that under control over the years w/ diet & lots of yoga. I had interstitial cystitis & constant bladder issues for many years too but that has also subsided. I dont have a ton of pain but as I said - i constantly do yoga. what is really concerning me is that it seems I can't gain muscle no matter what I do. It's as if my skin is beginning to just melt off my body & I work out constantly including time lifting weights the last year in an attempt to gain a little muscle back. It's not doing much to help my muscle mass at all. I am prematurely aging and want to know if there's a more serious issue going on inside that I should have examined.
I just don't know who to go to a rheumatologist, geneticist, endocrinologist? not sure. can you help?

leslie said...

I hope I am not intruding in your site. We manufacture a specialty undergarment for swimming that protects, for incontinence. I have a client whose daughter has EDS, and I am seeking to find out more about the needs of those with EDS. If this is something you might need, please know that we are here for you. Thanks, Leslie www.SOSecureProducts.com

Anonymous said...

OMG! I am so happy I found this site, after recently being diagnosed with EDs and while searching for information I found this... I have suffered chronic pain and what I thought were "random" issues forever! I was starting to believe I was a hypochondriac myself as I would constantly have so many varying problems!
My Girlfriend would say "There's always something wrong with you and you are always in pain" to which I would attribute to working hard! Being "Broken" is/was my normal state. I have been attending a pain clinic but with little results, I also take as many supplements as i can afford and have cleaned up my diet, but have still managed to get little to no satisfaction. I will be attending a Connective Tissue Clinic this month and am eager to see what they can suggest that may be different from anything I have tried, Thank you for My sanity and letting me know I am not alone nor Crazy!

Anonymous said...

I'm sorry for my English! i'm from Colombia, I have fibromyalgia, with a lot of pain, migranes headaches, herniated disk, spondylosis on my back,ibs,tingling,tendinitis on my heel, when I open my mouth big, my jaw pops out since I was 19 years old, chronic muscles spams on my back, astigmatism, myopia, a lot a veins, but my major suffering, it's my daughter, she has a lot of signs of the condition, I feel like i'm dying. GOD BLESS EVERYONE THAT HAS CHRONIC CONDITIONS. MY E;MAIL IS silvafotinos@aol.com please I hope somebody wants to communicate with me.

Hannah Henning said...

Wow. Never have I felt so "not alone" in my life. I can't believe that you have experienced pretty much the same thing I have (minus the bpd)

In reading your description about the POTS, I now think that may explain why my heart will just all of a sudden go haywire and pound loudly. If someone startles me awake, my heart won't stop pounding like that for a couple of hours. (the pain management psychologist seems to think because of a childhood trauma my body is on the alert for things like that and the whole fight or flight thing. I think that's a bunch of crap, because my trauma had nothing to do with a fight or flight adrenaline rush) but anywho, I would like to sit down and talk with you kinda one on one through email. Its great to have another sister in this disorder. My email is miospetlover@Yahoo.com

Thanks bunches,
Hannah (graphicgeek)

Hannah Henning said...

Oh and I also have chronic migraines and fibromyalgia. I'm surprised that you don't have it too

Eveline said...

Hi, I'm Eveline, I'm 18 years old and I live in Belgium. 2 months ago I was diagnosed with EDS and POTS. I recognize a lot of your story. School has just started again for me and I experienced a lot of problems. The biggest problem is that I can barely write because of my hypermobile fingers. Therefor I wondered if you're able to write with the silver ring splints you have. I think that would help me a little.
Finally, I just want to say that your blog was a real big help for me.

Bridgette Goeman O'loughlin said...

Its amazing to read all the stories of people with POTS and EDS, I have experienced symptoms of both since I was roughly 12, I can sprain ankles with the slightest of movements some leaving me on crutches for months at a time. I have horrible fatigue and lethargy as well as insomnia. I thought my gut was normal but the more I think about it I do have all those issues…. I have issues with skin sensitivity and the pain of bruising when i just scratch my skin, my memory is TERRIBLE, I can barely concentrate and I am always dizzy. Ive been using Flurinef and Midodrine, the Flurinef gives very mild relief and the Midodrine leaves me with a tingling scalp and only works for 4 hours (if i take it at lunch I don't sleep)… I have had issues with depression all my life and looking back I realise half of it was just the despair of not being able to do the same things as every one else. I am 21 years old I can barely work 2 days a week and study 2 days at university I am so fatigued I can barely study and I am so tired of all the other different aches and pains that come and go daily, I am sick of feeling the pain and my friends think I am over exaggerating my problems for attention!! HELP PLEASE I WANT TO LIVE LIKE A NORMAL 21 YEAR OLD :'(

Jaq Garrett said...

Hi Dani,

My name is Jacqueline. I've been disabled since 2004. I found out five years ago that I had Ehlers Danlos Syndrome. Six months ago I received a stem cell transplant (my own) in Jamaica. I'm making considerable progress, my POTS is dormant almost completely, and I am continuing to improve.

I have TONS of friends all over the globe with EDS, but none close to me. I've wished for so long that I would someday find someone in my vicinity who struggles with the things I face. The weather changes and everything that effects us in Ohio specifically. Also, specialists and healers we use. I would love to keep in contact and share.

I'd love to become an ally and advocate for you. I think this is something that will heal any sufferer of any illness, er or any sufferer of the world, especially those of us who heal ourselves for a living.

I'm having a rough time rehabilitating my hips through physical therapy. I've been bed bound for three weeks now. I have to apply for permanent disability, get a wheelchair and get more assistance.

I know you can understand what it's like to face these issues. I don't know anyone who understands. I'm so thankful for all my EDS support worldwide and internationally. I need some support here though. My family and friends have abandoned me over the past decade of my illness. Something most people who are disabled deal with. I want to also provide to you a friend who can understand without you needing to explain. Someone who can empathize.

Sorry if I'm rambling. I have too much to say and too much pain clouding my mind.

Anyway, I hope this finds you well.
I'd love to hear from you.

In health,
Jacqueline Nicole
facebook.com/jacqueenbee

P.S. I see a GREAT Ehlers Danlos Specialist at The Cleveland Clinic. Her name is Dr. Heather Gornik.

Jaq Garrett said...

I want to state that I, too, have been forced to go the pharmaceutical route with my treatment after a decade of battling through with only alternative therapies. I think the healthiest option is whatever works best for you and you are the only one who knows that. I support your decisions! I respect you making the choice to do what's best for you. Thank you for your sharing and diligence to raise awareness and help. I appreciate you.

Thanks,
Jacqueline

Brenda Latty said...

Thank you so much for having the strength to step out here and tell your story.

I am a 52 yr old female, living in California. I have Hypermobility Syndrome, Connective Tissue Disease and Degenerative Spine Disease.

I needed a connection to someone like me. I understand your struggle with daily living. Pain can consume our lives so we fight to enjoy the simple pleasures every single day.

God bless all who are dealing with similar problems.

Lainie said...

Where is Dani, does anyone know? She hasn't posted for a very long time.

Dani B said...

Have you ever tried the Tommie Copper sleeves or compression clothing? I'm just curious. My new doctor said I should wear one on every joint. I have the knee sleeves & I can notice some difference. I try to stay away from medications & cannot take most pain medications because I am allergic to so many of them. My doctor is starting me on cymbalta while we do more blood work, I am worried I will be allergic to it :( because I have allergies to similar medications.

Anonymous said...

I am wondering if anyone has tried to eliminate gluten and dairy from their diet? It can be difficult but I hear it can give some symptom relief...

Anonymous said...

I love your blog, along with many helpful links and resources. Very well done... wondering if you have heard of the Central NJ EDS Support group, at this link Central NJ EDS Support group
and EDSers United, web page at EDSers United - an organization dedicated to raising awareness for Ehlers-Danlos Syndrom, etc...
I have EDS Joint Hypermobility type and POTS, possible that I have vascular type, but not tested yet. Not diagnosed until age 45 in 2013. I also saw Dr. Levy. I was glad for his expertise, and greatly disappointed that he was so focused on the potential emotional problems I possibly had due to EDS. This irked me because most of my life I had been probing my pysche, convinced in fact, that my issues were purely psychological...and never imagined a genetic reason...the only thing I was good at was emotional denial of my physical symptoms, which made it difficult to give a history of some of my symptoms. but I digress.
Your blog is a great find...I will read more in the future. Keep up the good work!
I relate to the invisible illnesses - multiple. Not only do I have EDS/POTS, but also the gastro issues that come with it...I found your blog by googling,"lymphocytic gastritis". I have been diagnosed with narcolepsy, interstitial cystitis, vulvadynia, collagenouse colitis, collagenous sprue - I am gluten free, and more medical issues that I have to face. I'm employed FT in a career I love, which becames more challenging as the years go on, and have been resented because of my absences because I "don't look sick."
I sometimes feel tempted to wish someone might walk a mile in my shoes to understand...but it's not something I'd wish on anybody...

Anonymous said...

You are a fantastic, inspiring community. I'll keep reading.

colleen furman said...

My story is too long to tell, I will keep this as short as I can. I have been hyper-mobile my whole life. No every talked about EDS. When I was 35 years old my life started to fall apart: tumor in my pituitary gland 2005, lipedema (displaced fat cells in my legs) 2007, swelling and pain in my thighs 2009, blood clots in both lungs 2009, hands locking up 2010, partial and complete dislocations of hips and shoulders 1998+++, two brain aneurysms 2013, 3 brain surgeries, TMJ 1998, jaw bone dislocate 2015 and so much more. I lost my health ins after the first brain surgery. Stress over money and if I would be able to work made me more sick. Depression started to kick in. The migraines take me down for the count. I have been in the fitness industry for the last 25 years. Being a personal trainer, I knew my body and knew something was very wrong. I had been diagnosed wrong for years; most doctors would say, “all the pain was in my head”. I am telling you the pain in my thighs, hands, head and the vomiting was not in my head...it was real.. I have a great Specialist. She helped define my EDS, but seeing her once a year is not enough. I am sick of the hospital and doctors that don’t understand EDS. I try to be strong and find the happy lining in everything. It is hard sometimes. I am back to work after a year of recover. I pray I can do this. I want people to know people with EDS are real people need a chance to live pain free. Thanks for your blog. It was nice to find people like me. Only my mom understands. My brothers just don’t understand. Thank to my new friends in this blog, I have people that get it….gets EDS….
Have a happy and healthy day.

Victoria Betchley said...

I was reading not only your blog but also the comments. I am wondering if any of you know of any EDSers that have actually had a heart transplant besides Don Coover, who wrote a book "I left my heart at Stanford," because I haven't been able to find any others besides him. If you do know of someone please email me whatever information that you have on them. redrocksyourworld@hotmail.com Just put the subject as EDS HEART. As far as I can tell I am only the second EDSers that has had a heart transplant. He is the only case that I could find or that my cardiology team could find. Thanks for your help and all of you keep your heads up and keep trucking through. We can handle this and all of us sharing our story and supporting each other makes us a family, a family of pretty amazing people, even if the general public or doctors don't understand, we know what we are going through and we are the best support for each other.

Red

Ron L said...

This lady has found help for her EDS and POTS by dealing with methylation, histamine and other issues through low histamine/salycite diet and supplements. Don't know if it would apply to your case but just putting it out there just in case. http://methyl-nation.com/my-journey-out-of-severe-migraines-and-depression/ . Best Wishes! Ron

S Rocks said...

Very nice article!
TOSHIBA PVM-375AT

Anonymous said...

My story is everyones story. I am ecstatic I found you and everyone here. I can soooo relate. Everyone's story is so similar to everyone else's and mine too. I am saving this blog. I have been dealing with this illbess/ disease for almost to decades and NOW just NOW I git it! Its EDS hypermobile. I know because ALL of my diagnoses add up to this condition. Seeling GI surgeon Tuesday. Too many problems and ailments to say right now. But I have it. HELP!

Anonymous said...

I suspect that I have EDS type 3. Diagnosed with Degenerative disc disease (lumbar and cervical), spondylosis,crps,migraines, chronic fatigue,widespread musculoskeletal pain, joint laxity,hypermobility,sleep disturbances,IBS, depression, GERD,fibromyalia and heart palpitations. I have seen many doctors at the Cleveland Clinic and they still haven't connected the dots!Seeing EDS doc in November. Like all of you I find solace in knowing that I am not the only one.I simply could not deal with day to day living without God's help. I get through my bad days by being positive and knowing that there are people who are dealing with much more pain than I have.You guys are awesome because it takes an awesome person to stay positive through all of this! I wish the best for everyone here!

mark m said...

my daughter has a form of EDS and going to confirm which type next month. she had a little slip off an airline stairway ramp recently and almost completely ripped her shoulder joint out trying to catch herself on the railings. the best joint specialist doctor in the area found her connective tissue was so tissue paper thin that he almost couldn't re-attach it. her military service is now probably over. i was retired/disabled USPS in 2002 at 49 because of long episodes of very fast and severe irregular AF, neck,back,hip,and knee pain problems. i also get severely dry flaky scale only in winter skin problems. i have not been tested yet for EDS. i currently am fairly stable with no more severe AF and no meds. having good days and bad days but always having to get off my back a few times a day to ease the spine pains. i found that stress played a big role in my AF problems, and past emotional distresses. also having a great wife and daughter helps too.

Angus Gough said...

Thank you Dani.

G.H said...

This is a great share! I've found the more we can support each other and share the more we can raise awareness.

I talk about lots of the different topics you mention here in my EDS-HT positive rehabilitation blog generationhypermobility.com in lots of detail because what I felt when I was diagnosed was that there was no one to help me cope with the huge mountain to climb. Breaking it up into steps and knowing someone else has been there can really give you confidence to start your own journey to a life with stable EDS-HT.
I'm really keen on accepting EDS as part of a positive life and think being on control of your condition the way that feels best for you is a great way to go.
I'd love you to check it out - www.generationhypermobility.com

MagikDD007 said...
This comment has been removed by the author.
MagikDD007 said...

Hope you are doing well. Finally came to the conclusion that I may have this condition. A lifetime of this with so much discomfort, pain, brain fog, anxiety, BP issues, etc... Will be getting tested for EDS in the coming weeks. Have a CT scan scheduled prior (for something I originally though unrelated until I found this). Thank you so much for posting/sharing your story and also for everyone posting their experiences here. I’m speechless and feel like I’ve entered a world, that for so long, felt so alone in. I think the stats are that 1 out of 5,000 have this condition worldwide (making it a rare condition). Not sure how I survived this long. Sharing some other conditions (in case it relates for others). Seeing an infectious disease specialist for recurring kidney infections (which CT scans show mass scarring). Also scarring in my ears from repetitive ear infections as a child. Consequently, always very hyper-flexible as a kid/adult. Also recently diagnosed with severe OSA which they’re studying to see if sleep apnea is a secondary result from EDS. Imagine stopping to breathe 82X’s per hour for how many years? Plus full symptoms of EDS with a very demanding 24X7 job. A walking zombie I have been for years. We’re ALL fighters here!!! I’m in awe of everyone and wishing us all the best in life. Please keep sharing as it helps the few of us out there.

Lee Sellers said...

I guess a ‘Hello’ would suffice as an opening line, so… Hello! =P
My name is Lee, and I live in the North of Ireland, or Northern Ireland, whichever is preferred.
My life, for which I am still glad, is, like many of you, most definitely not a bed of roses. I have been diagnosed with the following:
- Paroxysmal Orthostatic Tachycardia Syndrome (POTS);
- Ehlers-Danlos Syndrome – Type: Hypermobility (EDS-HM);
- Neurocardiogenic Syncope Syndrome (NCS);
- Chronic Depression.
Symptoms began to manifest in 2005, though, for me, surviving meningococcal septicaemia in 2008/9 kick-started the year-by-year and, now, stage-by-stage, rapid decline of my health. I’m only twenty-four and, at times when things get too much for me, I often wonder what I did to deserve all of this! I try to push myself too much, to do the things my family and friends can do and I’ve now got to the stage where I can’t push anymore. At this stage, where I am physically and mentally exhausted, I guess you could say that I am glad to have found this blog. Nothing really works to relieve my pain, and as of this I would love to hear from anyone who has found a way of coping. I don't need to imagine the pain all of you experience, because I share that pain. I think we're strong people, because it's said that we're only given enough to handle. =) - I look forward to any and all responses. Thanks for the opportunity to post, Lee.

LYDIA HICKEY said...

Hi ya-all. Anote on the bi-polar. I was reading a post by a phisiolgyst who treats EDS patients. Guess what. He was saying the Bipolar aspect is actually caused by adreanal dumps. Think about it- stress of living in a messed up imperfect world + your bodies attempt to constantly heal those loose joints + trying to funtion as normal peoplekeep up with daily demands/ over doing it) = my body is tired, my body is healing, my anxiety caused by exposing myself to societies busy schedual and my adreanal glans are over worked.
Please look this up, don't take my word for it.
He also said he say a trend of traits: high functioning autistic, highly focused(adhd), creative, sucessful, and mood.

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