The Worst Symptoms of Ehlers Danlos Syndrome || EDS Awareness Month
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- Опубликовано: 5 окт 2024
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It's time to get down to the nitty gritty of what its like to have Ehlers Danlos Syndrome (EDS) or Hypermobile Spectrum Disorder (HSD) this EDS awareness month. Many lists of symptoms will be thrown about but the list is honestly never ending. In this video lots of lovely Zebras share their worst symptoms how how it feels to live in an EDS body everyday.
#EDSAwarenessMonth #ZebraStrong
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Bethany, Swindon. @stripes.and.spoons
Chloe, Kent. @chloestickings
Christina, Boston. @watercolor_me_impressed / @christinadoherty3212
Claire, Surrey. @painpalsblog & PainPalsBlog.wordpress.com
Faith, Alberta, Canada. @chronically.joyful
Georgina, Kent. @Georginas_journey & / @georginasjourney
Hannah, Weston-Super-Mare. @HannahMereweather
Jess, Hertfordshire. @JessGibson678 www.justgiving...
Katherine, Essex/Norfolk. @edwards.katherine
Kraig, Nottingham. @Kraigisonfire & / @kraigisonfire
Laura, Lincoln/Sheffield. @Lolaamaple
Lauren, Southampton. @IamLauren__
Lexy, Essex/Hertfordshire. @TheSunnyStudyGirl & prosecutorinpin... & www.justgiving...
Mary, Wiltshire.
May, Nevada, USA. @MayEnos1 & priceofgenetics.com & / lupieusgirl
Megan, California, USA. @EhlersDanlosGrl
Shannon, Hertfordshire. @Shannonhookerr
Shelby, New York, USA. @agirlisariot & / @agirlisariot & www.gofundme.c...
Stefany, Novara, Italy. @dolly937
Zoe A, Norfolk/Lincolshire. @zoes_tribe & / @zoes_story
Zoe C, Suffolk.
If You'd like to be in this year's EDS awareness month series for May 2019 please email me at ChronicallyJenni@gmail.com or contact me on any of my socials linked in the description. Spoons & Love x
Hi Jenni🙋🏻♀️if you make another one of these videos, I would love to participate 😄
Pain and fatigue. The biggest challenge however seems to be finding a doctor willing and able to help
Totally understand that! Where are you based Tim and I can see if I can give or pass you onto someone who can give you more advice on Doctors in your area.
@@ChronicallyJenni I'm near Scranton PA. I'm trying to get a neurologist for headaches and neuralgia, an orthopedic Dr for kyphoscolios, and pain management Dr.
I'm not an expert on the US I'm afraid but the EDS society have a really comprehensive list of professionals and there seem to be a fair few in your area so it might be worth having a look. www.ehlers-danlos.com/medical-professionals-directory/#usa
I'm not an expert on the US I'm afraid but the EDS society have a really comprehensive list of professionals and there seem to be a fair few in your area so it might be worth having a look. www.ehlers-danlos.com/medical-professionals-directory/#usa
The fatigue truly is brutal. It's difficult to always be so insanely exhausted even after sleeping more than enough.
Definitely one of the things I find the hardest and people seem to understand the least.
My worst symptoms are people not beliving me and not helping me. This is why it is called an invisible disease. When you are contantly in pain an nobody helps, that just intensifies the pain.
I agree that's one of the hardest things getting people to see and to understand Spoons & Love x
I absolutely agree! We only understand each other, but doctors understand the LEAST!
I have a good doctor who knows I have it but my dad always says “she’s only 14 she doesn’t know what pain is it’s just growing pains” my mom believes me more but it’s still hard cause most of my family doesn’t understand:(
I literally had a doctor tell me she thought I was crazy or making it up because when my symptoms started getting bad because they were all over the place so I kept getting tested for random diseases and all the tests were coming back negative so I did my own research found EDS and self referred myself to a rheumatologist who finally believed me.
@@cloudykitten465 I was told I was still having “growing pains” at 23/24 and was like there’s literally no way I stopped growing a few years ago.
This video was comforting because it makes you feel a lot less alone...but at the same time so sad to see so many people going through so much pain... and especially so young. Thank you for doing this though because it is great to raise awareness about it. My worst symptom.... hard to pick one because so many go together. It's probably gonna be the chronic pain... because it's CONSTANT. No matter WHAT painkillers I take, the pain actually never ends. When my knees or hips sublux that just adds to it, and the CONNNSSTTAANNTTT CRACKING OF MY JOINTS OMG..... It's so painful. Another symptom I really struggle with (told you I can't pick one!), is the anxiety and guilt. Anxious because I feel like I can't make any plans because my body will more than likely let me down somehow, and guilty because I can't do as much for my family as I'd like, and I just feel highly inadequate.
It's difficult but I'm so glad we are all in this together at least. It can be so difficult to distinguish between symptoms sometimes and what is causing what. I definitely agree with all of those symptoms for sure! But please never feel inadequate because you are amazing! x
@@ChronicallyJenni thanks my darling xxx
My worst symptom is acceptance I have a very small unreliable support system despite my large family they still try to convince me to hyperextend myself as a party trick
You have to listen to your body and do what you need to do to look after it. The best thing I've found through being on youtube and other social media is the community of people who do understand and are there to listen and help when needed. I found accepting as much of my situation as possible was the best way of moving forward. Feel free to drop me a message if you need. Spoons & Love x
I am sorry, yeah, family are not always the most understanding and even can be very critical and judgemental without doing much research. My brother was very ugly to me, many family members and friends 'get scared' of the gravity of a serious illness like EDS and try to ignore it. But you Don't have to be alone now :) , you have an extended family of other Zebras and the greater Invisible/ Rare disease community that Will love and support you on your journey ! :) Because we understand this journey in ways no one else can. I am at the Insufferable Movement on Facebook, Lindsay :) I run it with my partner Michael, I am 37 with EDS type 3 and POTS as well as my daughter who is 13yrs, if you need someone to talk to I am here. You might also like Charis Hill's blog at BeingCharis.com , she has A.S. but is an advocate for the invisible rare disease community as well as writes a lot about grieving the loss of Health ,acceptance and becoming your own advocate, finding happiness again.
Thank you so much for sharing some of your story and offering support Lindsay. This community is so great
Love this. My worst symptom is the unknown...day to day not knowing how bad it’s going to be, how much or how little I’ll be able to accomplish, if you’ll have to cancel anything, if the people you cancel with will understand. Makes it hard to work, make any plans, and causes a lot of anxiety for me personally.
I think the mental health issues that a physical illness can cause are often neglected and they shouldn't be because it definitely has a huge impact and can become one of the worst symptoms. Thank you fo sharing. Spoons & Love x
my worst symptom has to be migraines and frequent hip subluxations
Definitely know how those feels and they are up there!
I’m going through the migraine sooooo hard right. Ow
Fatigue for me too! I hate coming home from work and passing out. I have no life.
I definitely find fatigue to be one of the hardest things to control. Can you're work give you some more support to make things a little easier on you at all? x
My boss brushes me off when I try and bring it up. I don't know what else to do. Pretty soon I will have to apply for disability. I'm so tired one day I will stay on bed and not get up.
Can you see an occupational therapist to give you some ideas of what might be helpful for you at work? That way your boss doesn't have to be involved? Are you in the US? I wish I knew more about the rights and systems over there. If you ever want to talk please feel free to drop me a message or email all my info is in the description x Spoons & Love x
Personally I think the worst part about having EDS I also have POTS) is the fact I wasn’t diagnosed until last year when I turned 15. It broke my heart to have everything taken away overnight over the constant tiredness and pain some days I can’t even write in school and I want more than anything to be normal again and knowing I never will be hurts the most. To go from being an all Ireland dancing champion to being a sick girl that can’t get out of bed in the space of a few months is scary. It’s the hardest thing to explain to people that haven’t experienced the same thing and it hurts me so much to see my family worry about me. I just wish I could go back 6 or 7 years and do everything I know I’ll never be able to do now
I totally understand that pain lovely. It's so hard wanting to do all these things and not being able to but there are so many people with this condition that find their own ways of doing the things they love and adapting so that this stupid condition doesn't hold us back. I know how hard it is I really do but hold on to hope
My worst is temperature regulation issues. When it’s bad I get covered in goosebumps and will sweat and sweat and sweat!
YES! I totally get this too and often there's no reason!
Dysphagia - that's my worst symptom - not being able to swallow some foods, and always having to be careful when I eat. It makes eating around other people miserable because I have to focus on not choking, and worry about if there are foods available that I won't choke on. I can not have a casual dinner conversation. Everything else I can live with. Sending you all many hugs and healing light!
I'm so sorry you have such trouble swallowing Claudia, it's one of the symptoms people don't always think about! Hope you are finding things you are able to eat and enjoy when you can x Spoons & Love x
It is SO SCARY. I hate it.
This is breaking my heart...💔 Living with EDS and knowing how hard it really is, makes one wish it just ended with you... that No One else lived everyday at the level of suffering you face everyday, but there are so many of us😭 And we already Know how bad it is for eachother ... Much love to all my fellow Beautiful Zebras 🦓
My worse symptom is: intractable pain 24/7, and sometimes acute 'blackout level' intestinal pain
I'm hoping this video can be shared with non-zebras so that they can understand what we face everyday. Spoons & Love x
Bless you! 💕
I had no idea I had a whole community that deals with the same things I do. Thank you all for sharing 💕
Hey Brandi! Welcome to the Dazzle! Feel free to follow me on social media or join my support group (all in he description) whenever you need some support or just someone who 'gets it' x
It's the fatigue and brain fog that messed my studies up the most, previously diagnosed as CFS. Deep mental fatigue that stopped my studies dead absolutely killed my A-Levels. I'm 21 and have pushed my university studies back year after year. I'll be 23 when I attend at this rate. The Gastro issues or my hip, shoulder and neck subluxations immediately follow. Used to be my knee pain that beat all of them out before I started wearing my custom orthotics whenever I walk or stand.
Taking a break from uni to get my health back on the right track was the best thing I ever did and you can get so much support to make things easier. And getting to uni later I've found to have been an advantage. Hope you can get the help you deserve and get back to studying if that's what you want to do. Spoons & love x
I relate to this and we NEED groups for this. We need MORE awareness of EDS. I am currently in so much bloody pain it's unbearable. No one understands it. People just think pain is pain is pain. No. This is completely different. This is not something you can take tylenol for, ice, and wake up and it's gone. Do you agree that there should be an app or some website for support? I know there is the EDS website, but I mean a chatroom for people to talk and give each other tips. I want to talk about it joke "got an EDS inflammatory attack today...fun" no one in my life can understand that. You all can, so thank you for this.
Hey Kelly I'd love for you to join my facebook support group if you're interested just search Jenni's Dazzle on Facebook. I think one of the best things is being able to talk to people who really do understand. Spoons & Love x
@@ChronicallyJenni your an angel! I'd be happy to join 😄
Kelly Garris there is an excellent online support group for Chiari. Many of the people there also have EDS. My 11 yo daughter has both and I love the support and conversations I am able to have with people who understand from all over the world. The site is chiarisupport.org . My username is myangelface. You may find the support and answers you are looking for! Best wishes and prayers sent!
Mine is fatigue too! I just flaired back with gastro problems and I never know is something is noy gonna set right with me even water!
I know, the unpredictability is the thing that can be so frustrating about this condition! x
Pain and fatigue are my main problems. I get tendinitis in multiple joints regularly. HEDS caused early onset osteoarthritis in multiple joints. I’m now 52 and was only diagnosed 3 years ago. At least I now know why I’ve had continuous joint problems most of my life.
It's so frustrating knowing there's been an answer to all your problems all along. But I hope now you have a diagnosis you are getting some management advice? Spoons & love x
My worst symptom I would have to say is the gastrointestinal issues, as well as the fatigue. I can usually live with the pain daily. there are times when the pain is so bad, that it hurts to even move a tiny bit, but not being able to eat sometimes for days, not being able to go out with friends, and family and enjoy things like eating out, bbqs, picnics, birthday parties stuff like that is really hard. traveling usually doesnt happen unless I stick to a liquid diet. i dont usually eat or eat very little if I have plans, because I dont want to be stuck at home close to the restroom. my daughter is 15 and also has Eds. her main issues are dislocations/subluxations, pain and gastric as well. quite a few food intolerances.
I definitely understand that the daily pain is generally much more manageable than the symptoms that people think of less like the GI issues and fatigue. I'm sorry that you and your daughter are going through this. Sending lots of spoons & love your way x
My dad has EDS, and I was diagnosed with it too. I felt so crazy all the time but I knew obviously it had to be genetics bc we both have at least monthly knee dislocations. It’s not severe as others, thankfully but I do feel for everyone with it. It’s very hard to go through. I’m always scared that someone is going to jokingly kick my in the leg and my knee will dislocate, I can barely walk down stairs without having an anxiety attack, and I most definitely can’t run. It’s horrible, but I’m thankful it isn’t extreme as others.
Glad you guys got diagnosed and don't have to feel crazy anymore. Sending you lots of spoons & love and a very warm welcome to the dazzle x
great video! i just got diagnosed with EDS. i’m learning how different EDS is in every person. my worst symptoms are usually neurological from CCI/chiari!
Thank you! I know how bad the neurological stuff can be it was a CSF leak caused by EDS that meant I was diagnosed in the first place. Sending spoons & Love your way x
My worst symptom is the subluxation and dislocations that happen everyday day somewhere on my body. I have very weak ligaments, tendons nerves that snap or tearing anyway so when it happens most off the time they are effected. I also bone deformities in all my lower limbs so it puts more stress on them. That's why I hate having POTS also coz it means more than one limb is coming out or being injured when I wake up from blackouts. Complications wise my aortic root diameter growing bigger coz of the EDS and it's only a matter of time before it becomes serious. For my age it is already larger than it should be.
Oh bless you I hope you can find something that helps. Spoons & Love x
Mine has to be neurological. Since I was 18 I've had bladder leakage, and now at 21 I have RLS (especially if my hip is out), spasms in my right arm and left leg, unknowingly clenching my jaw, and all around random muscle weakness. Just sitting on the toilet my legs go numb really fast and it hurt. I've dropped my phone multiple time in the last few months just because my hand goes weak.
My Neurological symptoms can definitely be hugely impactful. I'm so sorry you're experiencing these horrible symptoms and hope you can get some support with them soon xxx
What is rls?
My son tore c1c2 ligaments. He had craniocervical instability.
He had headaches, chest pain, stomach throbbing, weak legs, nausea, dizziness, double and blurry vision, balance and coordination trouble, anxiety , mood swings, depression cognitive struggles. All from his neck. I believe now after his illness that symptoms of cervical instability can cause brainstem and spinal cord compression, look at the symptoms. He developed cerebellar herniation.
Doctors told me nothings wrong 4 yrs. I believe now that most of the serious eds symptoms are from the craniocervical laxity. A fusion might just stop alot of these awful symptoms. Only a few drs understand. Many docs doubted my son. Said hes lying. He was not. Dr Fraser Henderson is one of the best who understand it. Just fyi. God bless
I feel for you Kelley! I had similar issues with my CSF leak Doctors just not understanding the neurological impact. I really hope your son can get the help he deserves x
Chronically Jenni. He doesnt have eds but has c1c2 laxity. He had his c1c2 bones dislocated. We got atlas orthogonal and he is symptom free. Its possible his cerebellar tonsilar ascended too. We havent had a repeat MRI
Sorry I assumed he did as craniocervical instability is quite common with EDS. I'm very glad you have found a therapy which helps you. Lots of love x
my worst symptoms are bruising easily. I always get called strange because my hands move weirdly and even my friends think i’m weird because of it, i’m glad you made this video it made me feel a lot better about myself
Hey Rebecca, I'm so glad to hear this video made you feel better about yourself but never feel like your weird! Those people are obviously not very good friends if they make you feel bad. You do you and own it! Spoons & Love x
great awareness video! my worst symptom is severe weakness in my valves, which has caused my heart to go into heart failure. I'm waiting on MRI results to see if they can repair anything. The fatigue is awful too, EDS fatigue combined with heart failure fatigue makes me unable to function. I also get headaches daily due to intracranial hypertension, although my neurologist for some reason will not look into chiari/craniocervical instability. don't have any other options because NHS. I cannot walk much due to the fatigue, pain, and hip dislocations, but cannot afford a wheelchair as I was turned down for disability benefits, the assessor had no idea what EDS was. Sorry this turned into a rant but I'm struggling at the moment and hopefully anyone reading this understands and knows they're not alone
Hi Mary, I'm sorry that you are having such a rubbish time at the moment x With your daily headaches have you considered a csf leak as an issue also, It was my neurological issues which were my first problems and took me so long to get diagnosed with anything because they just put it down to migraines. I'd ask for a referral into London if that's something that is possible for you as it needs specialist attention x Also I recommend looking on facebook selling pages for a wheelchair, I got my walker on facebook for £10! If not maybe look into crowdfunding for one x If you ever need someone to rant at feel free to drop me a message or an email all of my info is in the description x Sending lots of Spoons & Love your way, you are not alone! x
I have headaches a lot. I am getting a cat scan soon.
Love that you made this video, it very well shows the wide ranges of symptoms that people with EDS go through. Thanks for spreading awareness!!
Thank you for watching! Spoons & Love x
My worst symptoms besides the chronic pain is the Cranialcervical Instability. I hate wearing a cervical collar and possibly needing surgery in the future.
I just got pretty much diagnosed with this and my doctor is pretty much saying I do I'm just one blood test away from it. I've been sick for years and aways had flexible joints and had a major ACL surgery and tore my ligament and tendons all while dislocated my knee. I'm honestly scared. I am 29 years old and I have been cleaning and working hard since I been a girl. I also was in a serious deadly relationship with some one who literally beat me up so bad tackling me. I spent a few years being homeless alot of cold nights and crying and sleeping on a hard ground.It's so scary to think I might have this and he did that to me I could have been killed. All the years I have been mowing lawns moving furniture with my dad lifting way beyond my limits I been doing it up to about a few weeks ago I started getting real bad. I had blood clots I had my daughter and a c section countless kidney stones and hysterectomy and major leg surgery I could have died I am not getting the support I need either. It's like people don't realize how scary it is. I can't not clean who else is going to do it ? And I'm definitely to the point I need help.
I'm so sorry you've been through all of this and really hope you can get the help and support you deserve
mines ALL the comorbidities! Like dysautonomia: gastroparesis and I dont regulate temps or hr/bp. Then with mast cell it causes all sorts of horrible GI inflammation and I will degranulate during heat/stress. If its during heat my sweat will actually burn my skin. People dont realize EDS is an inherited GROUP of disorders...not just one.
Yes! more people need to realise its not just one thing and it affects every single system!
My worst EDS symptom? Multiple miscarriages. I have one miracle baby, but I lost his twin and 5 other babies. I wasn't diagnosed until later in life so I didn't know. I've since had a hysterectomy due to uterine prolapse. Every day is painful but I regret my babies the most.
I'm so so sorry that happened to you, I'm glad you have your miracle baby but I can't think of anything more difficult than losing a child , all the love x
The shoulder dislocations
Please please please make another next year 🙏🏻 I would love to share
I definitely will I make them every year! I'll probably get a callout done fairly soon so keep an eye on my social media for details! x
My worst symptom is when literally can’t eat, I loose my appetite and if I force myself to eat my stomach bloats and hurts and the pain spreads through my body , making my joint pain worse, like wtf, I can’t even eat now? It’s a new symptom, I’m at the age where my symptoms are starting, they started at 13 and I’m 15 now, it’s only getting worse each second, I really hate being the disabled one, but I know there’s people like me, and that makes me feel better
I'm so sorry you're experiencing that! Gastro symptoms are talked about so little in the EDS community, especially by medical professionals. I hope you find something which can help. You're definitely not alone! Spoons & Love x
Pain and Fatigue for sure.
I also have gastric symptoms but haven’t been tested for gastroparesis. EDS is horrible.
It is but we are in this together at least ! xx Spoons & love x
I absolutely love this video, however the volume variance is a bit difficult to bear.
Thank you! I know I'm so sorry. I just wasn't able to work out how to fix it at the time but I've sorted it so it's much more equal for this years videos.
Rib cage subluxation
Ouch! x
One and only One agreed! Half the time I never know it happened until I feel the crappy pain in my ribs
Mine is a mix of sleeping troubles, fatigue, digestive troubles, and severe pain. It didnt start hitting my till Covid hit since I was unable to continue to swim at a nearby pool.
those all sound very familiar! lots of love and hope you can get back in the pool soon!
Im currently waiting to speak to a doctor about eds. I have been told repeatedly that nothing is wrong. And its in my head. Hoping i can get answers.
I Hope you can get some answers too Leanne! Keep fighting and hopefully you will find a good doctor with a decent understanding soon x
Me too, I recently moved house and feel like I'm back at square one, being told to go to rheumy after having been previously referred to genetics by rheumy
Did you manage to get it sorted?
My worst is the skin issues. The painful growths from scarring and the fragility of my skin on top of always bursting blood vessels in my hands and feet. Pots really sucks to.
Sending Spoons & Love your way! POTS really does suck :P x
The fatigue and POTS are the worst symptom for me. I don’t get many dislocations, but hurt my spine last year which was hell.
I definitely agree that my fatigue and POTS are the more difficult things to work through than the pain. I don't get too many dislocations either hope your back has improved a little now x
Chronically Jenni yes, it is much better. I just have some numbness in my toes still and pain at the bottom of my foot. Hoping it goes away soon. It’s been a while. Hope you’re as well as possible.
i am not diagnosed with eds (heds) but i have basically all the symptoms and my doctor is referring me to a rhumetolgejist. anyways, my worst symptom is probably the constant leg pain, especially at night. i literally can’t sleep because of it. also probably my knee subluxations.
I really hope the rheumatologist is good and can help you x I have really found biofreeze helps with my muscular leg pain and many other feel that deep heat or tiger balm also works. It makes it much easier to sleep. Spoons & Love x
Chronically Jenni thank you so much!
My worst symptoms are chronic pain and severe fatigue, my joints constantly popping.
Gastroparesis not being able to digest food, extreme pain, migraines, autonomic dysfunction
I also have Eds Hope your feeling well!
Welcome to the Dazzle!
The worst symptom for me is subluxing my ribs
Ouch! Spoons & Love Joe x
I have that too and I get high pulse and arrhythmia from it.
For me although I'm in pain 24/7 the headaches are a killer. I have a 'background' headache pretty much all the time however a few times a month it develops into a migraine which goes on to last about 3ish (or more) days. Which makes me useless
I completely understand. my headaches caused by my csf leak were my ultimate worst symptom and I'm glad I got the right treatment and my headaches are much less bothersome even if they are still there most days. Spoons & Love x
I’ve had issues since 11 years of age. My worst symptoms are subluxing of shoulders, hips, and knees, and issues with my heart. Two knee surgeries on the right knee, one on the right shoulder, and one upcoming on the left shoulder...also 4 ablations. Ehlers Danlos is Hell.
Sorry you're symptoms started so badly so young. Spoons & Love! at least we aren't alone x
Chronically Jenni Thank you.
For me, other than the joint issues are the eating issues. I just can't eat or swallow anymore and I can't find anyone to help me.
I'm so sorry you aren't finding the right help it will be out there its just not easy to keep fighting for when you are already sick and struggling. I hope you can get the help you deserve soon! Spoons & Love x
Knee dislocations. Always the leg my weight is on so I go crashing to the floor. Last night it happened while putting on pants and I fell face first into my wardrobe mirror and landed awkwardly on my arm
Ouch! That sounds very painful. It's a catch 22 because then you put all your weight on the other leg and cause that leg issues too, we just can't win. I do find sitting down to get dressed helps in those situations though :P Spoons & Love x
Mine is 100% the locked facets in my spine. This is the worst pain I’ve ever had and I’ve been dealing with locked facets for 3 years and I can’t find a cure to this. It’s horrible. I’d rather dislocate my collar bone a million times a day (only happens once in a while) rather than have locked facets. :(
I'm so sorry you're having to go through that Rachel! I hope you find some relief soon x Spoons & Love! x
My worst symptom would be pain. More particularly ligament, joint, muscle, and disc pain.
Definitely the main theme I think x Spoons & Love x
Experimenting with diet and exercise over the last 3 years. Amazing changes and progress but doubt anyone would listen.
Hey Tani I'm always interested in hearing about what helps people. I have been doing really well with excercise and dietary changes x
I have EDS
Jeez, I must be one of the few guys with EDS.
I know! I wish I could get more guys in my videos! There are some theories as to why there might be more women coming forward from strength to hormones but it's definitely not clear. I think men are also less likely to come forward and be part of these things so i'd really love to have you involved in my series this May if you'd be interested I really want to get more men on board! x
You not alone dude... 34 years I've been struggling with eds I have to wear shoulder Supports and knee supports because I dislocate so much
Flip Laraman I’m sorry to hear that. And you’re not alone.
This is a horrible disease. So sorry to all who have this. My question is, I am only seeing females have this. Do males get it too?
Yeah it definitely affects Men too and can affect them in exactly the same ways.. Sometimes It can affect men less severely as higher muscle mass usually helps to support joints and they dont have the hormone changes which can also affect it. Men are also less likely to reach out for peer support publicly it seems. In other years of this video series I've had guys involved.
Can anyone advise (UK please) how best to get a doctor to take notice and listen? I’m older (44) but do look younger ( I’m told that is a symptom, I’m not being a twat!). My hips are in agony 24/7 and although I’ve run the gamut of tests for everything from arthritis to fibro it wasn’t until recently a friend mentioned connective tissue disorders when she saw me repeatedly falling into a deep sleep at the cinema or at home. She remembered my crazy contortionist movements as a kid and teenager and knows about my awful GI symptoms and weird cardiac rhythms. Her dad is a retired GP. My own docs are SICK of me. Please help. Thanks x
Are you under a rheumatologist? This depends where you live in the UK and/or how far you can travel but the best route seems to be getting a local rheumatologist to refer you to one of the specialist centres. Dr Kazkaz at UCLH or Dr Mittal at Stanmore RNOH. I think there are other places in Bath maybe. Also great to contact the EDS UK or HMSA helplines but also feel free to drop me a message to any of my social media or email in the description. Spoons and love x
Thank you! Do you know anything about the jaw/teeth placement symptoms? I have a lot of Ed’s symptoms and had really unusual mouth symptoms as a child and wondered if it was just another symptom of Ed’s that I fit?
Hey Jordan, I know a lot of us get regular jaw pain and sublaxations/dislocations and dental crowding and having a high or narrow palate is one of the diagnostic criteria for hEDS, so it's definitely probable that your symptoms are EDS related. I'm not sure where you're from I know EDS UK definitely have some information and resources to with with dentistry and EDS I'll try and find them for you. Spoons & Love x
Yes that is somewhat a part.
Currently working towards a diagnosis! I am experiencing severe pain due to this disorder and I am desperate for a professional diagnosis so I can begin to get treatments. Do you have any words of advice for someone just starting their journey?
Hey Mona, Where are you from? Unfortunately there aren't any hard and fast 'treatments' for EDS it's all about learning skills and techniques for managing the pain. But my best piece of advice is to not take no for an answer. Before I was diagnosed many Drs told me nothing was wrong with me and I shouldn't have accepted that because I knew there was. When I was diagnosed many Drs said there was nothing they could do for me but I fought for a referral and the outcome from that has been great so never lose hope. Spoons & Love x
Im from california! I have a doctors appointment coming up in a few days and I plan to ask for my doctor to do some testing. Right now my doctor thinks its either EDS or Ankylosing Spondylitis, which my father has and its genetic. I also plan to ask for a referral to physical therapy so I can gain some strength back. My pain is better this morning! I had to knock myself out with tylenol PM last night, I was in so much pain and so very very frustrated. My doctor doesnt know much about EDS. How did your doctors diagnose you?
If you were in the UK I could advise you more unfortunately I don't know very much about the American system. Look into the beighton scale and head over to the ehlers danlos society website and ask your Rheumatologist to go through the criteria with you and go from there
I have really dry skin on my scalp elbows and I’m always peeling. And I also have pain in my spine and neck.
I've been getting a lot of very dry skin on my face recently it's quite strange. You're definitely not alone on the back and neck pain. Sending lots of spoons & love and happy holidays x
Keep going.
do eds sufferers get heavy periods?
Good Question. I'm not sure. I know I do but don't know if that's something that is EDS related x
Honestly i think it is connected (as someone with EDS who had to get an arm implant at age 14 for periods where i would be screaming for hours) but im not sure everyone has them. I think you are more prone to have a lot more painful periods, but im not a doctor:).
@@allisonplace4034 I really wouldn't be surprised if it was related x
I suffered from heavy periods. I went on birth control starting when I was in grade eight. It has helped with my periods tremendously. Although, that is not the case for everyone.
I think that has more to do with the individual woman than EDS.
Women w EDS are a bit more prone to postpartum bleeding as muscles and ligaments sometimes don't contract as well post birth for us contributing to hemorrhage.
Could you possibly suggest any doctors in the UK for diagnosis, I know this is what myself and my two young children have and I have been referred to a rheumatologist but I suspect it may take ages to be diagnosed and my children have to wait for help. Until I am, they are only 5 and 7 and my son has really bad Dislocations and we can't pull on his arms in the slightest which is difficult as they are both autistic and try to run off a lot 😑 any help would really be appreciated, I'm in the east Midlands. Cambridgeshire.
I don't know too much about paediatrics but I think there might be people at addenbrookes. The main centres are in London and need a referal from your local rheumatologist, can't be straight from your GP annoyingly. The Dr Kazkaz at UCLH or Dr Mittal at RNOH. I really hope you can find the help you and your children deserve soon. Spoons & love xxx
@@ChronicallyJenni Thank you so much, that helps just to know what will be the next step. Gentle hugs x
No worries Leanne! Let us know how you get on
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I see these are from years ago but I just stumbled across this if anybody ever wants to message me I'd love another zebra friend the pain is taking over my life every few months I lose another thing I'm able to do I'm starting to get depression and I've never been a depressed person I am always extremely positive and pain management is tapping out with me they're just not that helpful all of a sudden I have God so I know I'm going to be okay but some days the pain just makes it hard to think straight and keep my hopes up
I hope your okay. It's hard and tough, I hope you have someone in your life to lean on. I know someone going through the same thing.
And I can't take pain pills i have to smoke weed. And that's not fun with severe lung disease. I have no choice
bible thumper , is vaping or taking edibles something you've tried? there's no need to combust if you have lung issues
Eds is horrible. We suffer to no end. It never stops. If it's not one thing it's another.
This is a video I made today of what some of my worse EDS symptoms:
ruclips.net/video/yo9kw98Q5g8/видео.html
I didn't realise lara bloom ceo is a millionaire 😳
All females...is EDS rare in men?
I have a lovely man in one of the videos in this series Kraig who also has a great RUclips channel. and I had another one in each of my other EDS Awareness Month series' but it does seem to be much more common in women. There are lost of men out there but I think they are generally less likely to come forward I think x
The syndrome is more common in women and women are more commonly diagnosed. There are tons of men with EDS on our subreddit!
It seems that women are more affected by it than men because DAMM OESTROGEN
So men are probably under diagnosed
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I'm so sorry you're not a fan of my voice. I did have an awful cold at the time. Unfortunately I can't change my accent very easily. Thanks for watching. Spoons & Love xxx
Why are you trying to copy Chronicly Jaquie? Its WRONG!!!
Hi Suzette, I'm really sorry but I honestly wasn't aware that Chronically Jaquie made any videos like this one. I'm very sorry if she did but I have been making similar videos for awareness month each year since I was diagnosed almost 4 years ago and I really love involving the community and helping others across the world. I use the Chronically in my name like hundreds of others in the chronic illness community to connect with others living with similar conditions and because I didn't want to use my full name when I started the channel some years ago so I could keep this part of my life separate. I'm sorry if you think this is wrong. Spoons & Love, Jenni x
I understand the social disconnection/isolation because food :-(