We found the only geneticist in southeast Virginia is in Richmond at MCV. The first appointment they have available is 3 months away. Four of us in my family now have an appointment for the same day there. They did say the easiest to diagnose is the vascular form. Now I'm a little nervous that they may not be good if we are not vascular. But actually the evidence points toward vascular for us. Thank you, Deb
based on the scoring you mentioned, I have at least 5/9. my mom passed away at 53 with numerous dxs, including having gone through nerve and muscle biopsies completed in the mid 90's at MDA, where her doctors were unable to conclusively determine what the problem was but stated it was similar to ms. when I was pregnant my OB suspected marfans. as this journey with my family has just begun on the eds path, I thank you for the videos you have posted. the information is truly helpful!
Thank you for a description of classic "EDLS" is, as it is a complex syndrome that my surgeon and physician have asked me to have checked because I have the highest score on the Beighton scale and a connective tissue injury that hasn't healed properly. I still have further testing and want to try to understand as much as I can. With any luck it won't be EDS, and I do feel and pray for all with this syndrome as it is confusing and needs great physicians like yourself to help guide people in the right direction with proper information.
I have hypermobility. My son and I went to see our Hematologist today and she suggested we go get tested for this. She noticed by looking at my son's and my joints.
I'm a 6 to 8 out of 9 depending on my pain. My wounds do that always. I never knew it was abnormal until I had issues with my subluxations. I have POTS.
I have great difficulty regulating my body temperature too. It feels like the cold just "sticks" inside of me, and the only sure fix is a super-flaming-hot bath. Problem is, if I happen to overheat, I get all nauseated and dizzy, and my already-low blood pressure drops. If it's bad enough, I'll pass out. One thing I've found that helps is wearing vests. A good, thick vest will usually help my body retain its warmth without making me feel like I'm overheating.
Great question! Classical EDS patients can be just as hypermobile, if not more than hypermobile patients. Sometimes, geneticists will examine other family members to help them decide. It's also not unusual to have your diagnosis go back and forth a bit until there is a FINAL decision. It's kind of hard to tell from this distance! ha. :)
I guess that was a silly question to ask. i found it its on your website. Thank you very much for your help. With your videos and some research i am finally getting to understand my condition and maybe someday come in terms with it. At this point i want to convince my husband more than me that I Have EDS. i guess he is in his denial phase too! lots of love .
My wife Rachel has classic types 2 and 3 as does my Son Jacob who is 6 and my Daughter Angel. In the U.K we know very little about it. The hospitals use my son as a lab rat. Its heartbreaking. Thanks for the video.
I am pretty sure I have classic EDS I was just wondering how to go about getting a diagnosis, what sort of information do I bring to a doctor, and how I go about everything. I live in Canada so where should I go?
Hi Doug, I actually tried this in order to try to maintain muscle mass through menopause. It seemed like so many of us fell apart about that time! I stayed in the 'normal' range, but tried to stay in the upper normal range! No difference for me, but I DID see a study that some folks with fibromyalgia noticed decreased pain on HGH. Interesting... ;)
I was recently diagnosed with classic Eds with a 7 out of 9 by my cardiologist after being treated for Pots for 8 months. It was caught late and I struggle with chronic pain everyday. It is hard for me to get my doctor to guide me in treating my pain or even document my condition. So frustrating as I am fighting to get disability. The past year of my life has been consumed by these two conditions. Thank you for this information and would love any guidance in treatment.
I'm adopted, so I don't have a family history. The rheumatologist spent close to an hour reading through the notes I'd made on my medical history, asked a couple of questions, and examined me for just a few minutes before diagnosing me with EDS and Fibromyalgia. At the time, I kind of thought she was crazy.
Ran out of words lol. My wife covers-up all the time, she is so ashamed of her scars on her legs (the light is always off in our bedroom). I tell her she looks great, she just gets angry and says i'm lying and not to insult her by pretending i cannot see them. Of coarse i can see them, but they make no difference to how i feel or see her. I feel powerless to do anything. Hopefully i'll get answers soon. Thank you again. Tom
Hi! You can bring it up just like you mentioned! You can mention "Classic Ehlers-Danlos Syndrome" and have the doc running to the books. :) This is NOT NEARLY as rare as they say it is! We can get nodules on our thyroids (benign), and with dysautonomia, we can get "endocrinology gone wild". It's all in the book "The Driscoll Theory". Take a peek? :) Diana
I saw a geneticist earlier this month and scored a 7/9 in the beighton scale and am waiting on echo/ekg results (elbows do not hyper extend). The same DR saw my nephew (8/9 on beighton) and has determined classic as our base even though I have fewer classic symptoms. Is it possible that we have both classic and hypermobile in addition to our other marfanoid type symptoms?
There is a great deal of overlap between the two types, and many of us have our diagnosis go back and forth. Some people believe these two types are more of a spectrum than different types. The nosology may change again.... I don't think you have to be very concerned as to which one of these two types you have, as long as you've ruled out vascular... Just be sure to share your presentation with your doctors, so they'll know if you heal slowly, etc. :) Diana
Hi Luca, You're right. Our skin usually looks younger UNLESS we are out in the sun. Sunlight damages our delicate collagen easily and ages it prematurely. Ugh.
I'm so sorry for your struggles, Ghostx339. I remember telling my hubby that I felt like my body was MELTING! I also got to the point that not only could I not exercise, I couldn't even stay awake! I also sometimes became "paralyzed" if I laid on my back. Yikes. Some scary stuff going on with us, and my doctors looked at me like I was NUTS (ever have that happen)? ;) Please stay close by -- answers coming soon, I promise. Big hug...
Thanks, is it unusual to have the classifying factors of both? ie skin involvement as well as pain? Cause I know for a fact that even some of the strongest pain meds don't alleviate my pain but apparently my skin makes me seem classical. I don't think my sister even has classical symptoms though but she does have hypermobile. It is just frustrating. would you mind terribly if I pmed you some more questions?
Hi rottenegg!! Please don't be scared. We are all with you and will share all that we've learned. Please join us on the forum, OK? I'll get on there as often as I can. This is a journey, and my advice at this point would be to laugh whenever possible, and keep reaching out to others, OK? Big hug...
I have so much potential and drive to move forward but always feel like something is obstructing that. I feel as though no matter what I will have a cap to what I can achieve. I sucks to feel trapped .I can never finish as to what i do, which is why I got out of medical school. Its so sad for me. Even writing now is hard because my thoughts are scattered. I can feel the words in my head all over the place. P.s. sorry about so many comments on your video.
I was diagnosed when I was 5 years old when my dad was in the army and back then they didn't have the certain types as clearly as they do now. But I do have Classic Type. My parents experienced the child abuse charges when I was younger, but thankfully the dr that diagnosed me was the chief of staff and they were dismissed. I believe I am a nine too but it's been awhile since I was officially diagnosed with what type. I have severe bruising and scaring and my fingers and knees are the worst
I was diagnosed with the hypermobility type but after watching this I wonder if I have the classical they told me I had the velvety skin and my skin is slightly hyperextensible but I forgot to tell that I have stretch mark I think they believe I have hypermobility type because my joints are all so extremely hypermobile and always dislocating even though I have some of the classical symptoms. What's do you think?
My wife also has a heart murmer, her knees and forehead are scared quite badly. Her skin is very silky and stretchy. My son is very pale, he is flat footed (as is my wife and daughter). Angel's bowel prolapses frequently and we have to ease it back in. Its a truly terrible disease.
I want to know how do I get my GP to listen to me? I am on state insurance at the moment. I do not want to be but, I am grateful for it. But, I am in constant pain. My ribs, hips and shoulders and all other joints hurt all the time. My hips and shoulders will also sublux. I separated my shoulder in 2004 and both my daughters were born early bc of early rupture and then I developed uterine prolapse and had to have a hysterectomy. I do not know what to do. is there anything I can do?
Hi ganescus, it's sort of hard to tell from here (ha), but I know of one geneticist who asks "borderline cases" if they can touch their foreheads with their feet. If yes, she leans toward hypermobility. Some day soon, I think The Beighton Scale will be out-dated... But for now, it's all we have! :) Diana
Can you have abnormal healing, incredibly soft skin, and cysts with in the dermis in hypermobility type? I was always told I have type III until today when I went to a geneticist and he said I have classical and I am just shocked cause my sister has also been told she is type III. so either i am not classical or she is not hypermobile.
Can you have both? Ive been told im hypermobile and do have the major pain associated with it. But i also have classical type syptoms. Very soft velvety skin (been told that by other people my whole life) along with abnormal scarring, prolapsed uterus, prolapsed rectum at a young age. So im confused??? Can i have both?
My BP seems to fluctuate. Most of the time I just cant seem to sweat but recently when my period was delayed was when I've experienced the most sweat rather than usual moist feeling. It went away too.
Hi there, I have the classical form, and now have the pain. I believe I know why!! So, yes, you can have both (darn it). I started the forum on the website because answering individual questions is SOOOO overwhelming. Did you check out the forum? If that is not enough help, please take a look at the advocacy agreement on the front page, OK? As you know, none of us are "easy" patients! I hope to see you on the forum! :)
Yes, Elizabeth, so many doctors don't really understand how to check out hypermobility... :( The Beighton scale is not perfect (and as Amber just said below, there can be other reasons why a joint may be temporarily more or less flexible). But even I had trouble getting my diagnosis (I'm an easy 9/9!). I told the doctor I needed to see the geneticist, that I was a 9/9 & could easily put my palms flat on the floor. He said he could, too - and resisted the referral. Good grief! Hang in, Elizabeth!
I have EDS , my Neurologist has found it, but he never told me what type. I learned that it’s the Classic EDS type two. I have delayed healing and my skin is stretchy. I don’t know if I have the bumps on my feet, but I can’t see the back of my feet.
hi Dr. Diana. Hope your doing well. I recently realized that I have EDS . Based on your scoring I have scored a 7 or 8. Although, its a relief to know that I am not an alien , with translucent skin and knowing why I have these headaches and have very less energy or my thoughts are so scattered, I must admit I'm pretty scared.
When it comes to dislocating. My question is a couple years back I noticed a change in my eye sight when driving at night. I honestly couldn't see, even regular street lights blinded me. I was wondering does EDS effect your eyes too?
I've dealt with dislocations since I was 4 or 5. My mom has as well so she taught me to put myself back together. Your mention of stretchy skin and soft skin also sounds familiar. I bruise quite easily and take forever to heal as well. Also had the "stretch marks" at an early age and again recently. How could I bring this up to my doctor to be checked? Also you mentioned something on the thyroid gland. Can that cause symptoms of thyroid dysfunction with good blood work?
Carrie, you may want to join the forum on my site. Some folks may be able to help you firm up the diagnosis. It's a "clinical diagnosis", though. You've done the hard part! ;)
Hi ndpioneers, A geneticist who is very comfortable with EDS is your best shot. (I'd ask them before making the appt). Some are only good with the vascular form... Good luck!! :)
I'm so sorry, Cindy. Amazingly, your family doesn't sound unfamiliar! We'd love to see you on our forum. Maybe we can help... Maybe you or your kids could be in a treatment trial? Hang in, OK? Big, big hug..
Hi SellyNue, I'm so sorry to hear you are having problems hearing the vids. Did you check the later ones? My voice was much softer on the earlier ones (my voice was affected by EDS). I haven't heard of any problems with this in a LONG time, though (as evidenced by comments from folks who can hear them). I'm certainly no techno-wizard, my friend. I wish I could tell you why you can't hear them... Do you have an "alpha-geek" around (what we call my hubby at our house)! ;)
Hi, do you know of any benefit of using HGH to speed healing of injuries? Male with Classic EDS, in my late 30s. Connective tissue / tendon inuries becoming VERY common and much much slower to heal. Thank you!
I hear you on the denial bit. I kind of freaked out after hearing my diagnosis, especially upon learning that there's a 50% chance I've passed it on to my son. I'd been convinced it was SLE (I have two other autoimmune diseases), so I half-believed she had invented EDS on the spot.
I would like to ask you something though. Is it common to be burdened by Anhidrosis while being an alien(EDS). Its always been very hard for me to sweat. I do suffer from exhaustion and many other things. Hypothermia and hot flashes at 23 don't sound good but when I do get hot under the blanket I feel dizzy. I just dont understand how its possible for me to be so hot and then get cold at the same time. I have trouble regulating my temp throughout my body
Thank so much for sharing all of these wonderfully informative videos....I have two questions about something Im not sure of and wondered if you would have any insight? The first one is my Dr. told me based on a ct scan that one of my c spine vertebrae is not fused but she seemed to not be concerned as she said it was congenital even though I have had multiple issues with neck pain and severe muscle spasms in my upper middle back and was found to have a straight neck on my last x-ray taken after the last spasm happened and sent me to the hospital...I wondered, is this different than cranial instability? The second question regards skin....I have started to develop these round plaques (for lack of a better word) that are clear, plastic looking and barely raised. They dont itch or hurt but have slowly, over many months gotten slightly darker but no more than say 1-2 shades darker than my skin. My Dr. does not know what these are and I cant find anything regarding the description. Again thank you so much for putting these videos up, It has helped immensely for me to realize that the staggering list of symptoms that I have are not just in my head!
Hi Tracy, Most people (not all) with the really rough pain have the hypermobille form, not classic. There are of course exceptions both ways, but I am 54 and have little or no pain. My mom is 77 and has no pain. Cool? Are you having a lot of dislocations or subluxations? I subluxate like crazy, but have learned how to put things back in place (basically). I've never had surgery for a joint, and would be hesitant to do so because I don't heal well. So, expect the best, OK? And thank you, Sweetie.
Cindy, check at the beginning and end of the video. It states my website. If you get on, just click on "forum" and join in! (sorry I can give links in the comments! CA-RAZY!
Thanks for replying. I dont believe they do suffer with dysautonomia as its not in their records, but i will ask my wife. The doctors say my wife and kids have a very special case with having Classic type 2 with the hypermobility type 3 and thats why they use jacob as a lab rat, i know they need to research this disease, but i dont want him to feel different from others. He complains a lot with leg pain, he will say "ouch, my legs are burning" i feel so bad for him. i wish i understood more. Tar
Hey i was just wondering! My skin on face and neck is stretchy like yours! I also have a clicking jaw! I have pretty bad anxiety and just wonder if i do have ehlers danlos syndrome. I do have muscle and go to gym quite reguarlary! I do not have any hypermobility it hurts when i try and do your moves haha! I am 19 male. Could there be other reasons for my stretchy skin and clicking jaw? Please help!:(
I’m writing a list of my symptoms (most of what you’ve said) to give to my doctor who is pretty ignorant and doesn’t care very much but I really want a diagnosis of something since I’m struggling
Hi I have 5 boys all with EDS, I also have it. I found it hard to accept the diagnosis, my children are opposites, 2 are tiny, short, never eat, one has huge eyes and is pale as a ghost with veins showing, like a china doll at birth, huge bowel issues (same as 2 of his brothers, severe slow transit). I have another who is mild hypermobile, severe fatigue, very long face and is very tall for age - he was tested for Lujan Fryns and more, also has intellectual issues. All my 5 have autism.Confusing
nope, I don't take any medication. I am still kind of in the denial phase. It hasn't sunk in quiet yet. For the longest time I thought I was normal and everybody had super flexible fingers. I have been getting these headaches and yea I never sweat. Never. Where is your forum?
Hi Thomas, we also have a "combo presentation"... I don't believe that is unusual, actually. It IS hard to feel so helpless, I know. Please know that your wife and kids are in good company! This condition is terribly under-diagnosed. I hope these videos can be of some help. ;)
Hi rottenegg, Anhidrosis is very common with autonomic dysfunction. I think most of us end up with the sweating/flushing/freezing thing eventually (even the guys!). I've seen this with chronic fatigue -- even without EDS. Have you gotten on any antihistamines, perchance? HUGE help! ;)
my doctor highly suspects EDS. i have POTS,IBS (since a real little child) and a brain herniation (most likely chiari,still investigating it as i have all symptoms of chiari.) and i have subluxations,dislocations,chronic joint pain,i bruise easily,i have stretchy skin,i have those foot papule things,i'm hypermobile (8/9 on scale,used to be 9/9 before back pain set in and got pregnant) and i have atrophic scars and scars that look wrinkly and can stretch the skin of the scar aswell. my question is,is can be with hypermobility EDS have the foot papules,atrophic scars and stretchy skin? i know mild skin stretchiness is found in EDS3 and some cigarette paper scars but not sure about the foot papule things. what do you think?
Hi Qt4life6179, so many of us have gone back and forth on our diagnoses... Personally, I wonder if they aren't the same condition, just slightly different levels of presentation. Until the genetic defects are mapped, we just don't know. I wouldn't worry about which diagnosis you have, though. Treatments are the same for both. Hang in, my friend, Diana
I just want to share i do have eds and was born with it and I dig of 3 years old many years of doc the thing that upsets me is that doctoers test you'r jiont and muscles and you'r strength by telling you do not let them pull why they are pushing on you in any direction they want you to walk hop stand on one foot and so on I can do thoose things maybe i am just luck well hopping not so much any more any way
Like a said i dont habe trouble building muscle nor do i have pains! I just have convinced myself that my stretchy skin and clicking jaw and my anxiety is all caused from eds! My heart races all the time and think i have vascular eds! But i think it my anxiety
I’m flat footed. I even bruise easily. I believe it or not have a bruise on my left knee. I don’t bend over forwards that well due to Early Osteoarthritis and my age. But I do better bending backwards better.
Hi Thomas, I'm so sorry you and your family are dealing with this, too... Please know you are not alone! Does your wife (or kids) suffer from dysautonomia? I was the lab rat for our family, and will have some news for you soon. You may want to check out the forum on my site. Hang in, my friend. :)
I would disagree on a couple of points. I know the literature says that EDSer's age more rapid but in our family, it is just the opposite. The recommendation to get a skin biopsy for diagnosis seems to me that it creates another area to heal slower. A blood test will also do the trick. I know the blood test can be pricey because people in my family have been given quotes of $4,096. I had my testing done for $812 and insurance covered it.
EDS causes mast cell activation syndrome, and this one is the causes of the dysautonome. Almost everyone that has EDS has master cell ativation and doesnt know that his dysautonomie occurs because of this, specially if you are eating food that has stamina. If you consume stamina, the stamina will confuse all your body function and you will havr pots… etc
Actually, we don't see that many mast cell patients at POTS Care. We see quite a few patients with conditions that MIMIC it, however. It's a tough condition to pick apart, but you must pause to consider all options, especially if tryptase is negative. Hang in...
@@PrettyIll1 actually it was just discover recently in Brazil that almost all cases of disautonome its master cell ativation, and master cell ativation causes many disautonomes and POTS in EDS. People doesnt know that all around the world. Even doctors.. thanks for answear back, you have a sense o humor like mine. Very funny!
We use the term mediated postural hypotension, thats its very similar to POTS, but doesnt seems that your simpatic and parassimpatic are confused… it occurs because of the difficulty in pumping blood in the legs when we stand up.
Hi Amy, I think most of us share your frustration! I have a video out called "How to find a doctor" and the forum at Prettyill can be a great place to reach out to others. Perhaps it will help? Hang in, my friend... Big hug...
Yes, it does, Book Lover's Hideaway! Nothing goes unaffected, it seems. Please be sure to mention your connective tissue disorder to your eye doctor, OK? ;)
Thank you so much, abcieldtrips. I'm genuinely Pretty ill, but let's see if we can get better together, OK? I hope you can join the forum on our website! Big hug... ;)
Yes, Ghostx339, I remember the first time the paralysis hit. 'What the HECK just happened?' I remember thinking. I had a very bad episode of it for about 3 hours (I described it on my Mast Cell Week video) -- horrifying. I don't like doctors much any more, either. Oh, wait... Ha. Actually, I have ONE I like. I have certainly played "doctor roulette"! Hang in, my friend.
We found the only geneticist in southeast Virginia is in Richmond at MCV. The first appointment they have available is 3 months away. Four of us in my family now have an appointment for the same day there. They did say the easiest to diagnose is the vascular form. Now I'm a little nervous that they may not be good if we are not vascular. But actually the evidence points toward vascular for us.
Thank you,
Deb
based on the scoring you mentioned, I have at least 5/9. my mom passed away at 53 with numerous dxs, including having gone through nerve and muscle biopsies completed in the mid 90's at MDA, where her doctors were unable to conclusively determine what the problem was but stated it was similar to ms. when I was pregnant my OB suspected marfans. as this journey with my family has just begun on the eds path, I thank you for the videos you have posted. the information is truly helpful!
Thank you for a description of classic "EDLS" is, as it is a complex syndrome that my surgeon and physician have asked me to have checked because I have the highest score on the Beighton scale and a connective tissue injury that hasn't healed properly. I still have further testing and want to try to understand as much as I can. With any luck it won't be EDS, and I do feel and pray for all with this syndrome as it is confusing and needs great physicians like yourself to help guide people in the right direction with proper information.
Thanks for the video, it was very informative. My daughter was actually diagnosed with Ehler-Danlos Classic Form today.
Is severe fatigue a symptom?
I'm so glad you enjoyed it. If you need any help on this journey, please don't hesitate to reach out, OK?
Hugs to you both,
Dr. Diana
wow I wish you was my doctor; you are so genuine!
I have hypermobility. My son and I went to see our Hematologist today and she suggested we go get tested for this. She noticed by looking at my son's and my joints.
I'm a 6 to 8 out of 9 depending on my pain. My wounds do that always. I never knew it was abnormal until I had issues with my subluxations. I have POTS.
I have great difficulty regulating my body temperature too. It feels like the cold just "sticks" inside of me, and the only sure fix is a super-flaming-hot bath. Problem is, if I happen to overheat, I get all nauseated and dizzy, and my already-low blood pressure drops. If it's bad enough, I'll pass out.
One thing I've found that helps is wearing vests. A good, thick vest will usually help my body retain its warmth without making me feel like I'm overheating.
Great question! Classical EDS patients can be just as hypermobile, if not more than hypermobile patients. Sometimes, geneticists will examine other family members to help them decide. It's also not unusual to have your diagnosis go back and forth a bit until there is a FINAL decision. It's kind of hard to tell from this distance! ha. :)
I guess that was a silly question to ask. i found it its on your website. Thank you very much for your help. With your videos and some research i am finally getting to understand my condition and maybe someday come in terms with it. At this point i want to convince my husband more than me that I Have EDS. i guess he is in his denial phase too! lots of love .
Wow answers…thank you ❤
My wife Rachel has classic types 2 and 3 as does my Son Jacob who is 6 and my Daughter Angel. In the U.K we know very little about it. The hospitals use my son as a lab rat. Its heartbreaking. Thanks for the video.
I am pretty sure I have classic EDS I was just wondering how to go about getting a diagnosis, what sort of information do I bring to a doctor, and how I go about everything. I live in Canada so where should I go?
A geneticist referral from your dr.
Hi Doug, I actually tried this in order to try to maintain muscle mass through menopause. It seemed like so many of us fell apart about that time! I stayed in the 'normal' range, but tried to stay in the upper normal range! No difference for me, but I DID see a study that some folks with fibromyalgia noticed decreased pain on HGH. Interesting... ;)
I was recently diagnosed with classic Eds with a 7 out of 9 by my cardiologist after being treated for Pots for 8 months. It was caught late and I struggle with chronic pain everyday. It is hard for me to get my doctor to guide me in treating my pain or even document my condition. So frustrating as I am fighting to get disability. The past year of my life has been consumed by these two conditions. Thank you for this information and would love any guidance in treatment.
What is the best type of doctor to see for a diagnosis of EDS?
I'm adopted, so I don't have a family history. The rheumatologist spent close to an hour reading through the notes I'd made on my medical history, asked a couple of questions, and examined me for just a few minutes before diagnosing me with EDS and Fibromyalgia. At the time, I kind of thought she was crazy.
Ran out of words lol. My wife covers-up all the time, she is so ashamed of her scars on her legs (the light is always off in our bedroom). I tell her she looks great, she just gets angry and says i'm lying and not to insult her by pretending i cannot see them. Of coarse i can see them, but they make no difference to how i feel or see her. I feel powerless to do anything. Hopefully i'll get answers soon. Thank you again. Tom
Hi! You can bring it up just like you mentioned! You can mention "Classic Ehlers-Danlos Syndrome" and have the doc running to the books. :) This is NOT NEARLY as rare as they say it is! We can get nodules on our thyroids (benign), and with dysautonomia, we can get "endocrinology gone wild". It's all in the book "The Driscoll Theory". Take a peek? :) Diana
I saw a geneticist earlier this month and scored a 7/9 in the beighton scale and am waiting on echo/ekg results (elbows do not hyper extend). The same DR saw my nephew (8/9 on beighton) and has determined classic as our base even though I have fewer classic symptoms. Is it possible that we have both classic and hypermobile in addition to our other marfanoid type symptoms?
There is a great deal of overlap between the two types, and many of us have our diagnosis go back and forth. Some people believe these two types are more of a spectrum than different types. The nosology may change again.... I don't think you have to be very concerned as to which one of these two types you have, as long as you've ruled out vascular... Just be sure to share your presentation with your doctors, so they'll know if you heal slowly, etc. :) Diana
Hi Luca, You're right. Our skin usually looks younger UNLESS we are out in the sun. Sunlight damages our delicate collagen easily and ages it prematurely. Ugh.
I'm so sorry for your struggles, Ghostx339. I remember telling my hubby that I felt like my body was MELTING! I also got to the point that not only could I not exercise, I couldn't even stay awake! I also sometimes became "paralyzed" if I laid on my back. Yikes. Some scary stuff going on with us, and my doctors looked at me like I was NUTS (ever have that happen)? ;) Please stay close by -- answers coming soon, I promise. Big hug...
Thanks, I did see mention of a forum but couldnt see a link anywhere.
Thanks, is it unusual to have the classifying factors of both? ie skin involvement as well as pain? Cause I know for a fact that even some of the strongest pain meds don't alleviate my pain but apparently my skin makes me seem classical. I don't think my sister even has classical symptoms though but she does have hypermobile. It is just frustrating. would you mind terribly if I pmed you some more questions?
Hi rottenegg!! Please don't be scared. We are all with you and will share all that we've learned. Please join us on the forum, OK? I'll get on there as often as I can. This is a journey, and my advice at this point would be to laugh whenever possible, and keep reaching out to others, OK? Big hug...
I have so much potential and drive to move forward but always feel like something is obstructing that. I feel as though no matter what I will have a cap to what I can achieve. I sucks to feel trapped .I can never finish as to what i do, which is why I got out of medical school. Its so sad for me. Even writing now is hard because my thoughts are scattered. I can feel the words in my head all over the place. P.s. sorry about so many comments on your video.
I was diagnosed when I was 5 years old when my dad was in the army and back then they didn't have the certain types as clearly as they do now. But I do have Classic Type. My parents experienced the child abuse charges when I was younger, but thankfully the dr that diagnosed me was the chief of staff and they were dismissed.
I believe I am a nine too but it's been awhile since I was officially diagnosed with what type. I have severe bruising and scaring and my fingers and knees are the worst
Totally off topic, lol...I love your sweater!!! :)
I was diagnosed with the hypermobility type but after watching this I wonder if I have the classical they told me I had the velvety skin and my skin is slightly hyperextensible but I forgot to tell that I have stretch mark I think they believe I have hypermobility type because my joints are all so extremely hypermobile and always dislocating even though I have some of the classical symptoms. What's do you think?
My wife also has a heart murmer, her knees and forehead are scared quite badly. Her skin is very silky and stretchy. My son is very pale, he is flat footed (as is my wife and daughter). Angel's bowel prolapses frequently and we have to ease it back in. Its a truly terrible disease.
I want to know how do I get my GP to listen to me? I am on state insurance at the moment. I do not want to be but, I am grateful for it. But, I am in constant pain. My ribs, hips and shoulders and all other joints hurt all the time. My hips and shoulders will also sublux. I separated my shoulder in 2004 and both my daughters were born early bc of early rupture and then I developed uterine prolapse and had to have a hysterectomy. I do not know what to do. is there anything I can do?
Hi ganescus, it's sort of hard to tell from here (ha), but I know of one geneticist who asks "borderline cases" if they can touch their foreheads with their feet. If yes, she leans toward hypermobility. Some day soon, I think The Beighton Scale will be out-dated... But for now, it's all we have! :) Diana
Can you have abnormal healing, incredibly soft skin, and cysts with in the dermis in hypermobility type? I was always told I have type III until today when I went to a geneticist and he said I have classical and I am just shocked cause my sister has also been told she is type III. so either i am not classical or she is not hypermobile.
Can you have both? Ive been told im hypermobile and do have the major pain associated with it. But i also have classical type syptoms. Very soft velvety skin (been told that by other people my whole life) along with abnormal scarring, prolapsed uterus, prolapsed rectum at a young age. So im confused??? Can i have both?
Classic and Hypermobile fits me Galveston said They thought I had classic .
Can you have both classic and hypermobil form and if so what do you classify as? Would it be considered cross-over eds of hyper and classical?
My BP seems to fluctuate. Most of the time I just cant seem to sweat but recently when my period was delayed was when I've experienced the most sweat rather than usual moist feeling. It went away too.
Hi there, I have the classical form, and now have the pain. I believe I know why!! So, yes, you can have both (darn it). I started the forum on the website because answering individual questions is SOOOO overwhelming. Did you check out the forum? If that is not enough help, please take a look at the advocacy agreement on the front page, OK? As you know, none of us are "easy" patients! I hope to see you on the forum! :)
Yes, Elizabeth, so many doctors don't really understand how to check out hypermobility... :( The Beighton scale is not perfect (and as Amber just said below, there can be other reasons why a joint may be temporarily more or less flexible). But even I had trouble getting my diagnosis (I'm an easy 9/9!). I told the doctor I needed to see the geneticist, that I was a 9/9 & could easily put my palms flat on the floor. He said he could, too - and resisted the referral. Good grief! Hang in, Elizabeth!
I have EDS , my Neurologist has found it, but he never told me what type. I learned that it’s the Classic EDS type two. I have delayed healing and my skin is stretchy. I don’t know if I have the bumps on my feet, but I can’t see the back of my feet.
@2136cass I'm so glad this was helpful for you! I hope it saved you many unnecessary doctor office visits. :)
Big hug,
Dr. Diana
Well i got a 4/9 and i can do much more things then those u chose... so i think i am hypermobile?
hi Dr. Diana. Hope your doing well. I recently realized that I have EDS . Based on your scoring I have scored a 7 or 8. Although, its a relief to know that I am not an alien , with translucent skin and knowing why I have these headaches and have very less energy or my thoughts are so scattered, I must admit I'm pretty scared.
When it comes to dislocating. My question is a couple years back I noticed a change in my eye sight when driving at night. I honestly couldn't see, even regular street lights blinded me. I was wondering does EDS effect your eyes too?
I've dealt with dislocations since I was 4 or 5. My mom has as well so she taught me to put myself back together. Your mention of stretchy skin and soft skin also sounds familiar. I bruise quite easily and take forever to heal as well. Also had the "stretch marks" at an early age and again recently. How could I bring this up to my doctor to be checked? Also you mentioned something on the thyroid gland. Can that cause symptoms of thyroid dysfunction with good blood work?
Carrie, you may want to join the forum on my site. Some folks may be able to help you firm up the diagnosis. It's a "clinical diagnosis", though. You've done the hard part! ;)
Hi Carrie, Yes, you're right -- you should look into it! It is never diagnosed about 90% of the time, I'm afraid... Jeez. Let us know? :)
Hi ndpioneers,
A geneticist who is very comfortable with EDS is your best shot. (I'd ask them before making the appt). Some are only good with the vascular form...
Good luck!! :)
Thank you.
I'm so sorry, Cindy. Amazingly, your family doesn't sound unfamiliar! We'd love to see you on our forum. Maybe we can help... Maybe you or your kids could be in a treatment trial? Hang in, OK? Big, big hug..
Hi SellyNue, I'm so sorry to hear you are having problems hearing the vids. Did you check the later ones? My voice was much softer on the earlier ones (my voice was affected by EDS). I haven't heard of any problems with this in a LONG time, though (as evidenced by comments from folks who can hear them). I'm certainly no techno-wizard, my friend. I wish I could tell you why you can't hear them... Do you have an "alpha-geek" around (what we call my hubby at our house)! ;)
Hi, do you know of any benefit of using HGH to speed healing of injuries? Male with Classic EDS, in my late 30s. Connective tissue / tendon inuries becoming VERY common and much much slower to heal.
Thank you!
I hear you on the denial bit. I kind of freaked out after hearing my diagnosis, especially upon learning that there's a 50% chance I've passed it on to my son. I'd been convinced it was SLE (I have two other autoimmune diseases), so I half-believed she had invented EDS on the spot.
I would like to ask you something though. Is it common to be burdened by Anhidrosis while being an alien(EDS). Its always been very hard for me to sweat. I do suffer from exhaustion and many other things. Hypothermia and hot flashes at 23 don't sound good but when I do get hot under the blanket I feel dizzy. I just dont understand how its possible for me to be so hot and then get cold at the same time. I have trouble regulating my temp throughout my body
Thank so much for sharing all of these wonderfully informative videos....I have two questions about something Im not sure of and wondered if you would have any insight? The first one is my Dr. told me based on a ct scan that one of my c spine vertebrae is not fused but she seemed to not be concerned as she said it was congenital even though I have had multiple issues with neck pain and severe muscle spasms in my upper middle back and was found to have a straight neck on my last x-ray taken after the last spasm happened and sent me to the hospital...I wondered, is this different than cranial instability? The second question regards skin....I have started to develop these round plaques (for lack of a better word) that are clear, plastic looking and barely raised. They dont itch or hurt but have slowly, over many months gotten slightly darker but no more than say 1-2 shades darker than my skin. My Dr. does not know what these are and I cant find anything regarding the description.
Again thank you so much for putting these videos up, It has helped immensely for me to realize that the staggering list of symptoms that I have are not just in my head!
Hi Tracy,
Most people (not all) with the really rough pain have the hypermobille form, not classic. There are of course exceptions both ways, but I am 54 and have little or no pain. My mom is 77 and has no pain. Cool? Are you having a lot of dislocations or subluxations? I subluxate like crazy, but have learned how to put things back in place (basically). I've never had surgery for a joint, and would be hesitant to do so because I don't heal well. So, expect the best, OK? And thank you, Sweetie.
Cindy, check at the beginning and end of the video. It states my website. If you get on, just click on "forum" and join in! (sorry I can give links in the comments! CA-RAZY!
Great to know after the fact, right? ;)
BEEN THERE!
Thanks, ricagilmore
Thanks for replying. I dont believe they do suffer with dysautonomia as its not in their records, but i will ask my wife. The doctors say my wife and kids have a very special case with having Classic type 2 with the hypermobility type 3 and thats why they use jacob as a lab rat, i know they need to research this disease, but i dont want him to feel different from others. He complains a lot with leg pain, he will say "ouch, my legs are burning" i feel so bad for him. i wish i understood more. Tar
Well, Amber, welcome to our special little club! Membership is quite exclusive. ;)
Hey i was just wondering! My skin on face and neck is stretchy like yours! I also have a clicking jaw! I have pretty bad anxiety and just wonder if i do have ehlers danlos syndrome. I do have muscle and go to gym quite reguarlary! I do not have any hypermobility it hurts when i try and do your moves haha! I am 19 male. Could there be other reasons for my stretchy skin and clicking jaw? Please help!:(
That's a SMART rheumatologist! ;)
Thank you👍
I’m writing a list of my symptoms (most of what you’ve said) to give to my doctor who is pretty ignorant and doesn’t care very much but I really want a diagnosis of something since I’m struggling
Hi I have 5 boys all with EDS, I also have it. I found it hard to accept the diagnosis, my children are opposites, 2 are tiny, short, never eat, one has huge eyes and is pale as a ghost with veins showing, like a china doll at birth, huge bowel issues (same as 2 of his brothers, severe slow transit). I have another who is mild hypermobile, severe fatigue, very long face and is very tall for age - he was tested for Lujan Fryns and more, also has intellectual issues. All my 5 have autism.Confusing
nope, I don't take any medication. I am still kind of in the denial phase. It hasn't sunk in quiet yet. For the longest time I thought I was normal and everybody had super flexible fingers. I have been getting these headaches and yea I never sweat. Never. Where is your forum?
Hi Thomas, we also have a "combo presentation"... I don't believe that is unusual, actually. It IS hard to feel so helpless, I know. Please know that your wife and kids are in good company! This condition is terribly under-diagnosed. I hope these videos can be of some help. ;)
Hi rottenegg, Anhidrosis is very common with autonomic dysfunction. I think most of us end up with the sweating/flushing/freezing thing eventually (even the guys!). I've seen this with chronic fatigue -- even without EDS. Have you gotten on any antihistamines, perchance? HUGE help! ;)
@jendays247 Hahaha. Why thank you! It was a gift. I'll be sure to thank my friend, who has excellent taste! :)
You sound like me -- the Marfanoid type! Have you had your aortic root size checked? So glad I can be of some help... Big hug
my doctor highly suspects EDS. i have POTS,IBS (since a real little child) and a brain herniation (most likely chiari,still investigating it as i have all symptoms of chiari.) and i have subluxations,dislocations,chronic joint pain,i bruise easily,i have stretchy skin,i have those foot papule things,i'm hypermobile (8/9 on scale,used to be 9/9 before back pain set in and got pregnant) and i have atrophic scars and scars that look wrinkly and can stretch the skin of the scar aswell. my question is,is can be with hypermobility EDS have the foot papules,atrophic scars and stretchy skin? i know mild skin stretchiness is found in EDS3 and some cigarette paper scars but not sure about the foot papule things. what do you think?
Sophia Leah Have you had genetic testing?
Hi Qt4life6179, so many of us have gone back and forth on our diagnoses... Personally, I wonder if they aren't the same condition, just slightly different levels of presentation. Until the genetic defects are mapped, we just don't know. I wouldn't worry about which diagnosis you have, though. Treatments are the same for both. Hang in, my friend, Diana
Is it possible to have this without a family history of it?
+Ellie Horgan Yes it is, Ellie. It is also possible to see some family members more affected than others.
Thanks for your reply, your videos are brilliant!
I just want to share i do have eds and was born with it and I dig of 3 years old many years of doc the thing that upsets me is that doctoers test you'r jiont and muscles and you'r strength by telling you do not let them pull why they are pushing on you in any direction they want you to walk hop stand on one foot and so on I can do thoose things maybe i am just luck well hopping not so much any more any way
i got a 9 out of 9/8 sometimes if my muscles are stiff my knees wont bend backwards
Like a said i dont habe trouble building muscle nor do i have pains! I just have convinced myself that my stretchy skin and clicking jaw and my anxiety is all caused from eds! My heart races all the time and think i have vascular eds! But i think it my anxiety
Me too
thanks :D
I’m flat footed. I even bruise easily. I believe it or not have a bruise on my left knee. I don’t bend over forwards that well due to Early Osteoarthritis and my age. But I do better bending backwards better.
Hi Thomas, I'm so sorry you and your family are dealing with this, too... Please know you are not alone! Does your wife (or kids) suffer from dysautonomia? I was the lab rat for our family, and will have some news for you soon. You may want to check out the forum on my site. Hang in, my friend. :)
I would disagree on a couple of points. I know the literature says that EDSer's age more rapid but in our family, it is just the opposite.
The recommendation to get a skin biopsy for diagnosis seems to me that it creates another area to heal slower. A blood test will also do the trick. I know the blood test can be pricey because people in my family have been given quotes of $4,096. I had my testing done for $812 and insurance covered it.
EDS causes mast cell activation syndrome, and this one is the causes of the dysautonome. Almost everyone that has EDS has master cell ativation and doesnt know that his dysautonomie occurs because of this, specially if you are eating food that has stamina. If you consume stamina, the stamina will confuse all your body function and you will havr pots… etc
Actually, we don't see that many mast cell patients at POTS Care. We see quite a few patients with conditions that MIMIC it, however. It's a tough condition to pick apart, but you must pause to consider all options, especially if tryptase is negative. Hang in...
@@PrettyIll1 actually it was just discover recently in Brazil that almost all cases of disautonome its master cell ativation, and master cell ativation causes many disautonomes and POTS in EDS. People doesnt know that all around the world. Even doctors.. thanks for answear back, you have a sense o humor like mine. Very funny!
We use the term mediated postural hypotension, thats its very similar to POTS, but doesnt seems that your simpatic and parassimpatic are confused… it occurs because of the difficulty in pumping blood in the legs when we stand up.
Hi Amy, I think most of us share your frustration! I have a video out called "How to find a doctor" and the forum at Prettyill can be a great place to reach out to others. Perhaps it will help? Hang in, my friend... Big hug...
Yes, it does, Book Lover's Hideaway! Nothing goes unaffected, it seems. Please be sure to mention your connective tissue disorder to your eye doctor, OK? ;)
I'm disappointed. I am trying to get information about EDS to a friend yet all your videos have no sound! You need to check and see what is going on!
Thank you so much, abcieldtrips. I'm genuinely Pretty ill, but let's see if we can get better together, OK? I hope you can join the forum on our website! Big hug... ;)
Once a nine, always a nine! :)
Yes, Ghostx339, I remember the first time the paralysis hit. 'What the HECK just happened?' I remember thinking. I had a very bad episode of it for about 3 hours (I described it on my Mast Cell Week video) -- horrifying. I don't like doctors much any more, either. Oh, wait... Ha. Actually, I have ONE I like. I have certainly played "doctor roulette"! Hang in, my friend.
High five! ;)
i look younger than what i am but i will say now i am 60 i have noticed some aging
8 out of 9
I score a 9 out of 9...
Hmm, flat feet and blue hair. Blue hair IS one of the criteria, right? ;)
I have flat feet
She looks like Betsy devos x3
Your husbands a lucky man.