I was suicidal before my diagnosis and treatment plan. I had no hope. Getting the diagnosis and having doctors take me serious gave me hope and a reason to live again.
It took me 9 years to find what was wrong with my body. I was very suicidal thinking dying would be better than living this way. I had several doctors tell me its in my head what im feeling isnt possible that i need a psychiatrist or treated me like I was drug seeking. Which I have been in recovery for for about 15 years methadone treatment and have only been taking my prescription for 15years. Im managed. So finally i found a distant relative who had it posted on her Facebook page and i read the symptoms and knew right away that is whats wrong. I still haven't been diagnosed but i know its what is wrong. I can't find a doctor that will listen to me or take me seriously. Its terrible
I have had eds/hms for over 40yrs, and so much stuff hits us out of nowhere, that frankly the patient becomes more expert. I would love to see a doctor or consultant who suffers from chronic eds/hms,,and let them experience the daily hell it is and the ignorance and cynism so many doctors treat us with.
Hearing him at 4:00 made me tear up. My pain is so unmanaged and I'm starting to give up hope. Knowing this is progressive is making me give up... but hearing i could get back to a life again just gave me so much hope and happiness
This. This is how I felt hearing this I'm 22 and I just want to live. I didn't know about the eds till around 2 years agoish its gotten much worse and hearing him say that is fucking awesome.
I have read that it is a progressive illness but I have to keep holding onto my faith! I have done research on it as soon as I saw my diagnosis on paper.
Have you ever heard of taking Low Dose Naltrexone for pain? (Non opioid) It has helped my hEDS significantly! I’m currently on 3mg. I’d say from 1-10, my pain was at a 8-9 most days and now it’s at a manageable 3-4. You will still have flare ups and bad days, but the medication on a day to day basis really has made such a drastic difference in my anxiety and mental health all around too.
@@Loveandkindness33 I have to be careful with what I take, I have such high allergies to so many other medications, plus I have Epilepsy also along with my EDS.
For 30 years no doctor has ever been able to give me a diagnosis. I’ve lived in severe pain for years. Barely able to walk, lost my job and have had 8 orthopedic surgeries. I was however kicked out of the Army in 1981 for EDS.
My stepdaughter was just diagnosed with EDS after years of trying to figure out what was going on with her. So glad there is treatment and things we can do!
I’m 65 years old and have dealt with many of the symptoms mentioned here. I have been dismissed numerous times by health care professionals. I didn’t know what to ask, but my symptoms were so disorganized I couldn’t explain myself. I finally heard about EDS and asked my recent physician about EDS and he immediately dismissed me stating, “that has to be diagnosed in childhood”.
Hi, Courtney! I have EDS and severe pain too, I can barely stand up at all. Can I ask, did prolotherapy injections help you with spinal instability? Or is this treatment mainly aimed at muscle pain? I was told I might need a long spinal fusion which I really want to avoid but I don't know if prolotherapy can help with instability or only muscle pain. Thank you!
No one in my city will give me a treatment plan, all the rheumatologists reject me due to EDS... MY hand joints are so awful now and my movement and hypermobility. Idk why no one will help.
My oldest son had ehlers danlos syndrome he had the worst kind and was hospitalized most of his life in and out of the hospital he passed away at the age of 33 . I was told that the eds is passed down from my mothers side and
Omg i wish i could be made pain free. Im wheelchair bound and drowning in overwhelming pain. I also have Syringomyelia and loads of comorbid conditions. No help here in Oklahoma
I have EDS and mine is the Classical type, mine is type two. I can do the splits as a child and I still can. I can stretch my shin on my hands, under my eyes and on my neck behind my ears. I live in constant excruciating chronic pain! I bruise easy and I fell at my work and it took me a while to heal and I still will trip when I am walking thus I rely on my cane to help with stability. I got my diagnosis from my Neurologist, because I, too have Epilepsy. But my Epilepsy is not due to my EDS. I am now being tested for POTS or another form of Tachycardia. I use a Wheelchair or a Rolling Walker at my church because the building is very big and by the time I get to the church sanctuary I would be in pain and out of energy as well as lightheaded and unable to enjoy the service and the sermon. My EDS has progressed in my vision, thus is why my eye doctor is keeping a close watch on my eyes.
I wish you were in Atlantic Canada. I just want to stop living in pain and misery and being told that there's nothing wrong with me, but never having an explanation as to why my body is doing all these weird things it's doing.
This disorder affects the whole body and yes we get depressed it’s never ending too. Also Thank You to the dam vax everything escalated in flare since 3 dam years now pissed off is saying it mildly. Now compressions to deal with too besides the other issues we have grrrr
@@melanie.c25 I had surgery on both feet when I was a kid. I know how horrible recovery is! I still have terrible pain in both feet. If you can, get a CUSTOM orthotic to put in your shoe. The ones made of different density foam are the best. Using an ankle brace may help too. Try the prolotherapy if you can. I couldn’t afford to continue the treatments after lost my job. I hope it help 🥰. Never give up hope! Believe me, I feel your pain. You aren’t alone in this fight!
I wasn't diagnosed until my 60s. My skin feels like it's on fire always. I need bi-lateral reverse shoulder replacements and my other knee replaced at 67. I had knee issues at 12. I put my thumb to my wrist all the time. I had major knee surgery at 19. I've been on disability for 13 years. Barely surviving financially. Cervical and lumbar spine are shot. The pain is unvbearable. I'm constantly nauseous. Carafate stopped working.
Lord. I feel your pain and am right there too. Have you tried a food sensitivity test? Mine was eye-opening and I was able to put my POTS on the sideline. Now it's MCAS getting me. The #liondiet took away the rashes, but it hasn't really helped my RA. Wishing you luck.
In primary school i use to lie on my tummy and put legs over my head all the way up to my calf 😬 Prior to surgery I could stand with both feet facing backwards 😅 Lest I forget the tree climbing version of "chicken".. who could jump from the highest branch. My advantage came in when I landed from great heights and my joints would dislocate.. I'd just pop em back in!! circus freak hours over here .. Have totally tried to off myself many times yikes. I feel so bad for my GPS over the years, they have to manage so many patients and so many different conditions. They never know about EDS but do their best. Def heading back into suicidal territory as I age and things keep getting worse uhg. I just want to be able to work, use my hands properly, and find someone who can help with ehlersdanlos without it costing thousands of my nonexistent money.
I feel like I'm too sick in too many ways to be helped. It's very unfortunate that the links listed here go to link not found results. I was hopeful I could give that information to my doctors and maybe get some relief. They've put me on depression and anxiety meds and have already increased them, within a year, but there's been no improvement. The reason for this is severe pain and poor quality of life are the cause of my depression and anxiety, but my pain meds haven't been changed or increased since I started them >20 years ago. I've lost almost all hope of getting real help. I don't know what else to do and wish doctor assisted compassionate end of life were rights for every person. We shouldn't have to contemplate some violent suicide, when we could go peacefully and humanely with our loved ones around us instead. I'll never understand how it's the humane thing to do for animals, but not for humans.
Ive had the same thoughts myself. I have been struggling for 10 years and just finally figured out what my condition is last year because a distant relative has it. I was doing my family tree and a family member had posts on Facebook about it. I still haven't gotten diagnosed yet i cant find a doctor who will take me seriously and believe me. Or even listen to me for 5 minutes. In the beginning when my baby broke my nose with his head throwing his head back i started feeling everything in my face moving around then it traveled through my entire body everything moves underneath. Try to explain this to an emergency room doctor. They gave me a catscan xray but only said theres nothing wrong and it is in my head. Its not possible. I wonder if they ever figured out that it is possible and that had they treated me sooner ot might not be as bad as it is. My family doesn't understand what im going through. I try to talk About what im feeling and i get treated like im crazy. So i suffer in silence with it. When are they going to actually believe me when I drop dead from organ rupture? Or kill myself because the pain is too much to bare. Idk. Having someone to talk to that gets it might actually help me at least i wont feel like im all alone in this world with something that i thought no one else had for like years.
He mentions drugs he uses to control pain you must get on them .pain causes depression anti depressants don't help pain relief is what works you've a right to better treatment look for a specialist get referred it's easy to fell hopeless from chronic pain .
@@carterfamilyfuntime1705 I'm sorry you're suffering. Unfortunately, I've found even having the correct diagnosis doesn't always make a difference. I finally have the correct diagnosis, but it's something the ER staff hasn't heard of, so they treat me like I'm stupid, drug seeking (even though I'm asking for anaphylaxis treatment, not pain meds), or both. I had a nurse refuse to give me epinephrine, as the Dr ordered, because it "wasn't anaphylaxis like she'd seen before". She told her boss it didn't make sense to her and I was stupid. I told her, not all anaphylaxis is caused by a food allergy and I would expect a nurse of any experience to know that. Her boss called me to get more details and I told her that nurse has no place working in an ER. She needs to work in an office where they see the same shit every day and it's not life or death, at least until she gets more experience. There's nothing I hate more in the medical field than a know it all that doesn't know much and looks down on their patients because they don't have all the answers. I'm fed up with having to pay for no help and incompetence. It should be like hiring a plumber, if they don't fix anything, you don't pay.
My doctor just diagnosed me, bit I have no treatment plan. I was told in BC canada there is nothing available to help people with EDS. Super lost at this point.
Hi, what are the treatment options? My new Rheumatologist had just connected the dots on this with all my life long symptoms as for the being "double jointed" and palms flat on floor while legs straight thing, my yoga teachers were amazed and also the velvety soft skin people that hug me always say something like "you are so soft! Or you don't feel real". Traits most people seem to admire, yet now thinking they were symptoms all along . I'm overly sensitive to many medications. Side effects almost killed me so no more experiments. Was prescribed up to 18 medications at one time....Are there specific supplements needed? I've had POTS and vertigo since I was 2 years old, my parents disregarded it as me being sensitive to the environment. One of my children is also showing similar symptoms, also my youngest sister has had issues all her life too. I was misdiagnosed with Lupus even though all lupus tests showed negative so that was finally dismissed as a cause. Been in terrible pain and getting worse 😢 Is there really any hope that's going to be affordable? I'm currently disabled but fighting. I keep trying to make work attempts. Advice needed. Thank you.
It's so hard to get diagnosed I'm starting to give up I cant jion in with my friends because pain I'll be in next day that can last for days drives me insane 😭
I’ve been waiting for PCP/GP/Family Doctor for 7 months now after mine retired and there’s a shortage. Thankfully, I found a physiotherapist that has experience with EDS who understands how long and drawn out the diagnosis process can be. She’s been working with me to help me manage my pain and it has already helped sooo much. Although it’s validating just to be taken seriously, I can’t wait till I have an official diagnosis.
My wife was recently diagnosed by her genetics Dr. Only problem is all the Dr's at Kaiser will not recognize disorder and don't have a treatment plan or listen to any suggestions. It is still in there eyes only in her head.
I'm 45. I've recently trained to be an RN in Canada, and have been practicing for about a year. I'd never heard of EDS before my girlfriend mentioned it last week. I'm almost certain I have it. Anyone know if chronic headache is a symptom?
I need more info about this treatment. Anyone here with first hand experience? My shoulders dislocate on a weekly basis with daily spasms. I had a doctor when i was a teenager incorrectly diagnose me- do surgery on one of the shoulders and now its so loose that the muscle is ripping. The pain is terrible and my current ortho is telling me to just keep doing physical therapy or look at a shoulder fusion.
My wife has found some relief from prolotherapy using dextrose. At her last appointment her specialist tried the treatment Dr Burling uses and found it more effective than the dextrose with similar levels of pain flair following the dextrose treatment. We are hopeful that this new treatment will provide better results in her other joints. Platelet rich plasma injections are another option, effective but more costly. I wish you all the best 💚
I was really healthy a few months ago. I took some food supplements and my body reacted badly. My hips and joints feel like they are breaking all the time. I’m almost completely crippled and just want my life back.
Hi I’m from Edmonton Alberta Canada i really need help there’s no drs here to help with EDS and there telling me only women can get EDS and I know it’s not true or is it I’m entersex I don’t know if that makes a difference please get back to me. I have no life I can no longer work every time I try. I pop my joints I get injured I can barely move. Takes me about four hours just to get out of bed. It’s to the point where I’m extremely depressed. I’m begging you help me.
Yes men can have EDS too but there is a smaller proportion of them compared to women. I think mainly because men have more muscle to support joints than women. Don’t give up there is help out there but it takes some effort to find it unfortunately. Join the EDS community online. I’ve learnt many helpful tips from other sufferers to manage my pain.
EDS is a non sex-linked dominant trait so the risk to offspring is 50% regardless of sex. Men have the higher levels of testosterone so they tend to have milder symptoms than women (as a rule). The penetrance of the gene is what makes the difference between those affected less or more. If you carry a gene with greater penetrance, you will have more symptoms. Your dr is a doofus for telling you that. Find someone else if you can. Please look for some posts that I just did in 2 responses close to your post a little higher up in the comment section. I gave some info that you might find helpful. I'm sorry that was told to you. Dr's should not tell people things in which they do not have expertise .
There is limit to having the medical professional work on your body when they get things wrong 90 % of the time working on you thinking they no and understand the complexity of H/EDS and all other types, and bits you have from other types that you may have do fit into a neat little box the medical professional like to do,, 🙏 amituofu
I was diagnosed with eds as a kid in the early 90's. I finally got pregnant after several miscarriages and the pregnancy made my eds symptoms go out of control. Im unable to work. I applied for disability and i got denied. My doctor's are not listening to me. I need help
Are you in uk? I went private to see Dr Paul Brennan in London. Diagnosed and now have a treatment plan. I pray that you get the validation and help you need.
What if you have random tissue manifestations but only a hyper spine. Your youngest son has all hyper joints. And my middle had the appearance of marfan. I don’t know if I should see help.
You absolutely should, if they receive diagnosis and treatment at an early age you may help to mitigate the effects of eds as they grow up. Finding a supportive rheumatologist or other specialist is key as a lot of medical professionals don't understand the disorder and its different presentations. They are operating on old information and their own biases. Research, research, research, and keep fighting until you find a clinician who understands and can help your family. I wish you all the best 💚
I can't help with GPs but the Hypermobility Clinic is based in Christchurch, I believe they are the only specialists in the south island who focus on EDS. I wish you all the best 💚
Omg I think this is what I have. My mother has it too and both of my adult children. My son has dislocated his elbow twice and his shoulder once. My daughter has had digestion issues. I live with chronic pain. But the three of us can do great party tricks together. Where can we get help? We are in Wellington.
I know you posted this a while ago, but ask to see a physiatrist (they are MD's who specialize in body mechanics). But before you ask your primary care person for a referral, start by checking physiatrists online who have excellent reviews. Then call them and ask if the Dr. treats EDS patients. These dr's are most equipped to also know how to diagnose and treat instabilities and can refer you to for appropriate bracing (big help), and sports taping (that stabilizes tough areas to manage like shoulders). Look for clothing that is made specifically for people with EDS. They make undershirts and other garments that have elastic bands that hold you together which reduces pain. Find a physical therapist that does water therapy. Try to see a naturopath that has experience with immunology because EDS is a disorder involving protein metabolism so we have differences in how we absorb certain nutrients, and how effectively we make hormones, enzymes, and neurotransmitters. Being deficient makes it even harder to heal and function cellularly. My naturopath (with degrees in biochemistry and organic chemistry) made some changes that really improved my son's and my life. Also, they have found a link to autism spectrum disorder, so that is important to watch out for. Lastly, your symptoms can be much better or worse within the family due to what is called penetrance of the gene. My sister has it but is mildly affected. I am wrecked. Best to you and your family.
What about depression because of burnout (I think) because you have been pushing yourself so hard to be normal without knowing what was wrong. And always thought you are just weird and not capable.
That's me basically. I always was trying to keep up with others but simply couldn't without burning out and leading to injury. I was a little chubby as a kid so I thought that was the cause of my issues for some time. But then I got skinny and it never went away. Now I know better than to push myself, which has helped, but I still struggle with it.
EDS usually gets worse with age.. As a child i only suffered from like 3-4 symptoms, now at 24 it's like 20+ symptoms. I'm not living, i'm surviving.. I hope this disease gets more attention!
@@andrxmeda97 Yeah I had no idea I had it till it got worse. There is treatment but life is hard and you gotta keep fighting to keep above water. There is hope, try not to hate your body and take extra care and learn what helps. Goodluck 💚
I had a major knee dislocation I had major ligament reconstruction again then post op injection major uhm drug reaction now Epi pen the back sprain and steroid injection then bulging c3 c4 neck then ankle sprain then I was dislocating my left elbow crutching post surgery then my right hip with my dysplasia my subluxing then I fell in my shower end up with a major concussion fluid in my brain unconscious post concussive for over a month I thought the pain would never end.. all from opening my fridge twisting and dislocating my knee cap snapping my patella ligament and everything got off balanced and spiraled But hey guess what? I’m ok now again. Ehlers people take a lot longer to heal, I was out of work for over six months and went through hell, I still haven’t gone back to the gym, but I’m not having massive pain attacks and I’m able to function. It does get better it does get worse because we just are special. I have a nickname, “gumby” I have good and bad months not days. But there is good Hope this helps Hang in there ❤
Hi dear, please check orthopedic clinics in your city, these days some do provide the Prolotherapy treatment. Not sure which city you live in but, for sure there are treatment centers in Maharashtra, Tamil Nadu, Hyderabad. Please check it out.
To follow up on my comment, just by being skinny I always felt weak and frail, and the reality is I was and still am weak and frail, and those feelings are amplified by the fact I permanently have aches and pains, people just think I’m soft and exaggerating, I will kill myself soon
Ask your dr to see a pain clinic and let them know you think you may have EDS. Be clear as to how your pain affects your ability to function (were you able to bathe, cook for yourself, do laundry, buy food, etc. Keep a diary or better yet, make a grid with check boxes for activities you can and can not do each day and record any triggers that cause the flares and how long they last (I have had good success with the charts with docs). Long term pain that is not treated can cause what is called pain centralization which are changes in how your brain processes pain. Dr.s can prescribe anticonvulsant drugs (like Lyrica) which is FDA approved to improve nerve pain. The antidepressant Cymbalta also is approved for pain so when it is recommended, it's not just for depression. Ketamine infusions helped me by close to 70%. Insurance does not cover it and it is very expensive. It does not eliminate it, but I also have CRPS which is more common in people with EDS which is pain centralization on steroids.Don't let anyone talk you into implantable pain nerve stimulaters as they are more likely to move out of place with our unusually flexible spines and be ineffective or even cause more pain. We need to avoid surgeries if at all possible. EDS patients also have larger amygdalas which is the fight or flight center in the brain. Magnesium threonate is a calming nutrient that most of us are deficient in, and the threonate type is the only type of magnesium that crosses the blood brain barrier. Pain drs are more likely to approve the partial antagonist opiate, bupenorphene (same drug they use for opiate withdrawal and maintenance) which has a protective effect to prevent overdoses by not attaching to all the opiate receptors. It has been shown to be as or more effective than regular morphine for people with chronic pain centralization (it acts on certain cells that are the gateway signaling cells between the body's periphery and the central nervous system called glial cells, and regular morphine does not). Ask to see a physiatrist (MD that specializes in body mechanics). Call around first to find one that sees EDS patients. They help with recommending bracing and will look for things rheumatologists will not. See if you can get a recommendation to see a physical therapist that does water therapy. Prayers are with you today, my friend. I tried to off myself failed, yet am 70% better now and want to live again albeit carefully. I was bedridden for 6 years and in a wheelchair for 9. I can walk unaided now but wear braces all over.
There is no cure at this stage. The research and treatments available are at the cutting edge of the science. It will take time and progress is being made in understanding the disorder and how to manage the symptoms of eds. We must do what we can with what we know for now. It is a genetic disorder and at this time it is accumulative damage which we must attempt to avoid. I wish you all the best 💚
It’s such a weird condition. I have two forms(classic and hyper mobile) and back in early to mid Highschool there was a lot of pain, but through lifting weights I have been able to keep pain to a minimum. The way I think of it, I build up my muscles to keep my joints in place, but still I have small weaker muscles that when get overworked cause injury (especially shoulders)
@@Catlily5We paid for the genetic testing to be sent to the US to rule out any of the other subtypes even though we knew my wife had hEDS. There is research and progress being made to find the genes for hEDS, it is likely that hEDS is an umbrella term which will be divided up into the different presentations and comorbities. All we can do is what we can with the information we have and hope they can isolate more genes which are associated with the presentation of hEDS. Progress is being made, don't give up hope 💚
The link in the description to Dr. Rabago’s assessment of this treatment protocol is broken. Here is the correct link. www.hqsc.govt.nz/assets/Consumer-hub/Partners-in-Care/Publications-resources/Prolotherapy-review-letter-Dr-Rabago.pdf
I was suicidal before my diagnosis and treatment plan. I had no hope. Getting the diagnosis and having doctors take me serious gave me hope and a reason to live again.
Do you have type III would you be intrested in talking?
That's where I am right now. Was there any treatment that pulled you out of it, or just the diagnosis and doctors that gave you hope again?
I live in the states and i haven't found a good multicare facility yet... frustrating
It took me 9 years to find what was wrong with my body. I was very suicidal thinking dying would be better than living this way. I had several doctors tell me its in my head what im feeling isnt possible that i need a psychiatrist or treated me like I was drug seeking. Which I have been in recovery for for about 15 years methadone treatment and have only been taking my prescription for 15years. Im managed. So finally i found a distant relative who had it posted on her Facebook page and i read the symptoms and knew right away that is whats wrong. I still haven't been diagnosed but i know its what is wrong. I can't find a doctor that will listen to me or take me seriously. Its terrible
you can get completely cured.
I have had eds/hms for over 40yrs, and so much stuff hits us out of nowhere, that frankly the patient becomes more expert. I would love to see a doctor or consultant who suffers from chronic eds/hms,,and let them experience the daily hell it is and the ignorance and cynism so many doctors treat us with.
Hearing him at 4:00 made me tear up. My pain is so unmanaged and I'm starting to give up hope. Knowing this is progressive is making me give up... but hearing i could get back to a life again just gave me so much hope and happiness
This. This is how I felt hearing this I'm 22 and I just want to live. I didn't know about the eds till around 2 years agoish its gotten much worse and hearing him say that is fucking awesome.
Me too!
I have read that it is a progressive illness but I have to keep holding onto my faith! I have done research on it as soon as I saw my diagnosis on paper.
Have you ever heard of taking Low Dose Naltrexone for pain? (Non opioid) It has helped my hEDS significantly! I’m currently on 3mg. I’d say from 1-10, my pain was at a 8-9 most days and now it’s at a manageable 3-4. You will still have flare ups and bad days, but the medication on a day to day basis really has made such a drastic difference in my anxiety and mental health all around too.
@@Loveandkindness33 I have to be careful with what I take, I have such high allergies to so many other medications, plus I have Epilepsy also along with my EDS.
For 30 years no doctor has ever been able to give me a diagnosis. I’ve lived in severe pain for years. Barely able to walk, lost my job and have had 8 orthopedic surgeries. I was however kicked out of the Army in 1981 for EDS.
My stepdaughter was just diagnosed with EDS after years of trying to figure out what was going on with her. So glad there is treatment and things we can do!
I’m 65 years old and have dealt with many of the symptoms mentioned here. I have been dismissed numerous times by health care professionals. I didn’t know what to ask, but my symptoms were so disorganized I couldn’t explain myself. I finally heard about EDS and asked my recent physician about EDS and he immediately dismissed me stating, “that has to be diagnosed in childhood”.
or , "no it's not that" because THEY want to make the diagnosis and feel big.
Thank you for posting. Fraser has saved my life. I would not be here without him, he is an amazing person and I owe him everything.
I am on the waiting list , looking forward to getting some real help !
I wish there was a doctor like this in Australia! 🥺
@@onefabknitternz same!!
Hi, Courtney! I have EDS and severe pain too, I can barely stand up at all. Can I ask, did prolotherapy injections help you with spinal instability? Or is this treatment mainly aimed at muscle pain? I was told I might need a long spinal fusion which I really want to avoid but I don't know if prolotherapy can help with instability or only muscle pain. Thank you!
@@anyalazor7978 Fraser’s prolotherapy has helped my spine / it’s been a long, slow process but it’s been remarkable
We also have larger amygdalas generally and more reactive flight or fight systems.
No one in my city will give me a treatment plan, all the rheumatologists reject me due to EDS... MY hand joints are so awful now and my movement and hypermobility. Idk why no one will help.
Ignorance
My oldest son had ehlers danlos syndrome he had the worst kind and was hospitalized most of his life in and out of the hospital he passed away at the age of 33 . I was told that the eds is passed down from my mothers side and
I was born in Timaru 1963. Always had hyper 8:24 joint mobility. I am still having a hard time with Doctors in Australia. I live in Darwin now.
I feel like I’m getting worse every day and have no help from GPs here in UK.
Omg i wish i could be made pain free. Im wheelchair bound and drowning in overwhelming pain. I also have Syringomyelia and loads of comorbid conditions. No help here in Oklahoma
Yes help not as available in US as other countries
No help in the US. Stuck in the cyclical system.
I have EDS and mine is the Classical type, mine is type two. I can do the splits as a child and I still can. I can stretch my shin on my hands, under my eyes and on my neck behind my ears. I live in constant excruciating chronic pain! I bruise easy and I fell at my work and it took me a while to heal and I still will trip when I am walking thus I rely on my cane to help with stability. I got my diagnosis from my Neurologist, because I, too have Epilepsy. But my Epilepsy is not due to my EDS. I am now being tested for POTS or another form of Tachycardia. I use a Wheelchair or a Rolling Walker at my church because the building is very big and by the time I get to the church sanctuary I would be in pain and out of energy as well as lightheaded and unable to enjoy the service and the sermon. My EDS has progressed in my vision, thus is why my eye doctor is keeping a close watch on my eyes.
I wish you were in Atlantic Canada. I just want to stop living in pain and misery and being told that there's nothing wrong with me, but never having an explanation as to why my body is doing all these weird things it's doing.
Good info, Thank you for helping ppl w/ EDS.
Hurrah for realising we are so many.
This disorder affects the whole body and yes we get depressed it’s never ending too. Also Thank You to the dam vax everything escalated in flare since 3 dam years now pissed off is saying it mildly. Now compressions to deal with too besides the other issues we have grrrr
I had prolotherapy with dextrose. It did seem to help with ankles and wrists but not larger joints.
Thank you for sharing, this gives me hope. I have an ankle injury that refuses to heal and I’d like to kook into trying prolotherapy.
@@melanie.c25 I had surgery on both feet when I was a kid. I know how horrible recovery is! I still have terrible pain in both feet. If you can, get a CUSTOM orthotic to put in your shoe. The ones made of different density foam are the best. Using an ankle brace may help too. Try the prolotherapy if you can. I couldn’t afford to continue the treatments after lost my job.
I hope it help 🥰. Never give up hope! Believe me, I feel your pain. You aren’t alone in this fight!
I recently tripped over and dislocated my shoulder. So much pain 😢
I wasn't diagnosed until my 60s. My skin feels like it's on fire always. I need bi-lateral reverse shoulder replacements and my other knee replaced at 67. I had knee issues at 12. I put my thumb to my wrist all the time. I had major knee surgery at 19. I've been on disability for 13 years. Barely surviving financially. Cervical and lumbar spine are shot. The pain is unvbearable. I'm constantly nauseous. Carafate stopped working.
Lord. I feel your pain and am right there too. Have you tried a food sensitivity test? Mine was eye-opening and I was able to put my POTS on the sideline. Now it's MCAS getting me. The #liondiet took away the rashes, but it hasn't really helped my RA. Wishing you luck.
I have EDS, POTs and chronic vertigo.
In primary school i use to lie on my tummy and put legs over my head all the way up to my calf 😬
Prior to surgery I could stand with both feet facing backwards 😅
Lest I forget the tree climbing version of "chicken".. who could jump from the highest branch. My advantage came in when I landed from great heights and my joints would dislocate.. I'd just pop em back in!!
circus freak hours over here ..
Have totally tried to off myself many times yikes.
I feel so bad for my GPS over the years, they have to manage so many patients and so many different conditions. They never know about EDS but do their best.
Def heading back into suicidal territory as I age and things keep getting worse uhg. I just want to be able to work, use my hands properly, and find someone who can help with ehlersdanlos without it costing thousands of my nonexistent money.
I feel like I'm too sick in too many ways to be helped. It's very unfortunate that the links listed here go to link not found results. I was hopeful I could give that information to my doctors and maybe get some relief. They've put me on depression and anxiety meds and have already increased them, within a year, but there's been no improvement. The reason for this is severe pain and poor quality of life are the cause of my depression and anxiety, but my pain meds haven't been changed or increased since I started them >20 years ago.
I've lost almost all hope of getting real help. I don't know what else to do and wish doctor assisted compassionate end of life were rights for every person. We shouldn't have to contemplate some violent suicide, when we could go peacefully and humanely with our loved ones around us instead. I'll never understand how it's the humane thing to do for animals, but not for humans.
Ive had the same thoughts myself. I have been struggling for 10 years and just finally figured out what my condition is last year because a distant relative has it. I was doing my family tree and a family member had posts on Facebook about it. I still haven't gotten diagnosed yet i cant find a doctor who will take me seriously and believe me. Or even listen to me for 5 minutes. In the beginning when my baby broke my nose with his head throwing his head back i started feeling everything in my face moving around then it traveled through my entire body everything moves underneath. Try to explain this to an emergency room doctor. They gave me a catscan xray but only said theres nothing wrong and it is in my head. Its not possible. I wonder if they ever figured out that it is possible and that had they treated me sooner ot might not be as bad as it is. My family doesn't understand what im going through. I try to talk About what im feeling and i get treated like im crazy. So i suffer in silence with it. When are they going to actually believe me when I drop dead from organ rupture? Or kill myself because the pain is too much to bare. Idk. Having someone to talk to that gets it might actually help me at least i wont feel like im all alone in this world with something that i thought no one else had for like years.
He mentions drugs he uses to control pain you must get on them .pain causes depression anti depressants don't help pain relief is what works you've a right to better treatment look for a specialist get referred it's easy to fell hopeless from chronic pain .
@@carterfamilyfuntime1705 I'm sorry you're suffering. Unfortunately, I've found even having the correct diagnosis doesn't always make a difference. I finally have the correct diagnosis, but it's something the ER staff hasn't heard of, so they treat me like I'm stupid, drug seeking (even though I'm asking for anaphylaxis treatment, not pain meds), or both. I had a nurse refuse to give me epinephrine, as the Dr ordered, because it "wasn't anaphylaxis like she'd seen before". She told her boss it didn't make sense to her and I was stupid. I told her, not all anaphylaxis is caused by a food allergy and I would expect a nurse of any experience to know that. Her boss called me to get more details and I told her that nurse has no place working in an ER. She needs to work in an office where they see the same shit every day and it's not life or death, at least until she gets more experience. There's nothing I hate more in the medical field than a know it all that doesn't know much and looks down on their patients because they don't have all the answers. I'm fed up with having to pay for no help and incompetence. It should be like hiring a plumber, if they don't fix anything, you don't pay.
Misogynie@@Rls_0523
My doctor just diagnosed me, bit I have no treatment plan. I was told in BC canada there is nothing available to help people with EDS. Super lost at this point.
We're in Alberta and told the same thing.
There is not much real help ANYWHERE. In France the doctors most active in research have retired.
Hi, what are the treatment options? My new Rheumatologist had just connected the dots on this with all my life long symptoms as for the being "double jointed" and palms flat on floor while legs straight thing, my yoga teachers were amazed and also the velvety soft skin people that hug me always say something like "you are so soft! Or you don't feel real". Traits most people seem to admire, yet now thinking they were symptoms all along . I'm overly sensitive to many medications. Side effects almost killed me so no more experiments. Was prescribed up to 18 medications at one time....Are there specific supplements needed? I've had POTS and vertigo since I was 2 years old, my parents disregarded it as me being sensitive to the environment. One of my children is also showing similar symptoms, also my youngest sister has had issues all her life too. I was misdiagnosed with Lupus even though all lupus tests showed negative so that was finally dismissed as a cause. Been in terrible pain and getting worse 😢 Is there really any hope that's going to be affordable? I'm currently disabled but fighting. I keep trying to make work attempts. Advice needed. Thank you.
Are you in the states?
Thank you do much.
It's so hard to get diagnosed I'm starting to give up I cant jion in with my friends because pain I'll be in next day that can last for days drives me insane 😭
Hello. there is a cure . Florida doctor is already curing this without dangerous pills.
see the testimony
ua-cam.com/video/x9gz1vtk8jU/v-deo.html
Go to your PCP and ask for a referral to a rheumatologist or bone specialist
I’ve been waiting for PCP/GP/Family Doctor for 7 months now after mine retired and there’s a shortage. Thankfully, I found a physiotherapist that has experience with EDS who understands how long and drawn out the diagnosis process can be. She’s been working with me to help me manage my pain and it has already helped sooo much. Although it’s validating just to be taken seriously, I can’t wait till I have an official diagnosis.
My wife was recently diagnosed by her genetics Dr. Only problem is all the Dr's at Kaiser will not recognize disorder and don't have a treatment plan or listen to any suggestions. It is still in there eyes only in her head.
I'm 45. I've recently trained to be an RN in Canada, and have been practicing for about a year. I'd never heard of EDS before my girlfriend mentioned it last week. I'm almost certain I have it. Anyone know if chronic headache is a symptom?
For sure - the ehlers danlos subreddit is a great place to search for specific symptoms.
Yup. It's very common. ❤
I need more info about this treatment. Anyone here with first hand experience? My shoulders dislocate on a weekly basis with daily spasms. I had a doctor when i was a teenager incorrectly diagnose me- do surgery on one of the shoulders and now its so loose that the muscle is ripping. The pain is terrible and my current ortho is telling me to just keep doing physical therapy or look at a shoulder fusion.
My wife has found some relief from prolotherapy using dextrose. At her last appointment her specialist tried the treatment Dr Burling uses and found it more effective than the dextrose with similar levels of pain flair following the dextrose treatment. We are hopeful that this new treatment will provide better results in her other joints. Platelet rich plasma injections are another option, effective but more costly. I wish you all the best 💚
I was really healthy a few months ago. I took some food supplements and my body reacted badly. My hips and joints feel like they are breaking all the time. I’m almost completely crippled and just want my life back.
This was very helpful
Hi I’m from Edmonton Alberta Canada i really need help there’s no drs here to help with EDS and there telling me only women can get EDS and I know it’s not true or is it I’m entersex I don’t know if that makes a difference please get back to me. I have no life I can no longer work every time I try. I pop my joints I get injured I can barely move. Takes me about four hours just to get out of bed. It’s to the point where I’m extremely depressed. I’m begging you help me.
Yes men can have EDS too but there is a smaller proportion of them compared to women. I think mainly because men have more muscle to support joints than women. Don’t give up there is help out there but it takes some effort to find it unfortunately. Join the EDS community online. I’ve learnt many helpful tips from other sufferers to manage my pain.
I have heds and all three of my sons have it also. So yes men can absolutely get it.
EDS is a non sex-linked dominant trait so the risk to offspring is 50% regardless of sex. Men have the higher levels of testosterone so they tend to have milder symptoms than women (as a rule). The penetrance of the gene is what makes the difference between those affected less or more. If you carry a gene with greater penetrance, you will have more symptoms. Your dr is a doofus for telling you that. Find someone else if you can. Please look for some posts that I just did in 2 responses close to your post a little higher up in the comment section. I gave some info that you might find helpful. I'm sorry that was told to you. Dr's should not tell people things in which they do not have expertise .
There is limit to having the medical professional work on your body when they get things wrong 90 % of the time working on you thinking they no and understand the complexity of H/EDS and all other types, and bits you have from other types that you may have do fit into a neat little box the medical professional like to do,, 🙏 amituofu
I was able to stick my shoulder blades out at right angles
I was diagnosed with eds as a kid in the early 90's. I finally got pregnant after several miscarriages and the pregnancy made my eds symptoms go out of control. Im unable to work. I applied for disability and i got denied. My doctor's are not listening to me. I need help
Are you in uk? I went private to see Dr Paul Brennan in London. Diagnosed and now have a treatment plan. I pray that you get the validation and help you need.
@@Lionessliving I'm in the US
What if you have random tissue manifestations but only a hyper spine. Your youngest son has all hyper joints. And my middle had the appearance of marfan. I don’t know if I should see help.
You absolutely should, if they receive diagnosis and treatment at an early age you may help to mitigate the effects of eds as they grow up. Finding a supportive rheumatologist or other specialist is key as a lot of medical professionals don't understand the disorder and its different presentations. They are operating on old information and their own biases. Research, research, research, and keep fighting until you find a clinician who understands and can help your family. I wish you all the best 💚
Anyone in Christchurch have advice re getting a diagnosis/know a GP with good awareness of EDS?
I can't help with GPs but the Hypermobility Clinic is based in Christchurch, I believe they are the only specialists in the south island who focus on EDS. I wish you all the best 💚
Omg I think this is what I have. My mother has it too and both of my adult children. My son has dislocated his elbow twice and his shoulder once. My daughter has had digestion issues. I live with chronic pain. But the three of us can do great party tricks together. Where can we get help? We are in Wellington.
I know you posted this a while ago, but ask to see a physiatrist (they are MD's who specialize in body mechanics). But before you ask your primary care person for a referral, start by checking physiatrists online who have excellent reviews. Then call them and ask if the Dr. treats EDS patients. These dr's are most equipped to also know how to diagnose and treat instabilities and can refer you to for appropriate bracing (big help), and sports taping (that stabilizes tough areas to manage like shoulders). Look for clothing that is made specifically for people with EDS. They make undershirts and other garments that have elastic bands that hold you together which reduces pain. Find a physical therapist that does water therapy. Try to see a naturopath that has experience with immunology because EDS is a disorder involving protein metabolism so we have differences in how we absorb certain nutrients, and how effectively we make hormones, enzymes, and neurotransmitters. Being deficient makes it even harder to heal and function cellularly. My naturopath (with degrees in biochemistry and organic chemistry) made some changes that really improved my son's and my life. Also, they have found a link to autism spectrum disorder, so that is important to watch out for. Lastly, your symptoms can be much better or worse within the family due to what is called penetrance of the gene. My sister has it but is mildly affected. I am wrecked. Best to you and your family.
What about depression because of burnout (I think) because you have been pushing yourself so hard to be normal without knowing what was wrong. And always thought you are just weird and not capable.
That's me basically. I always was trying to keep up with others but simply couldn't without burning out and leading to injury. I was a little chubby as a kid so I thought that was the cause of my issues for some time. But then I got skinny and it never went away. Now I know better than to push myself, which has helped, but I still struggle with it.
I have this. I’m getting worse for some reason?
you can get cured. see the testimony ua-cam.com/video/x9gz1vtk8jU/v-deo.html
EDS usually gets worse with age..
As a child i only suffered from like 3-4 symptoms, now at 24 it's like 20+ symptoms.
I'm not living, i'm surviving..
I hope this disease gets more attention!
@@andrxmeda97 Yeah I had no idea I had it till it got worse. There is treatment but life is hard and you gotta keep fighting to keep above water. There is hope, try not to hate your body and take extra care and learn what helps. Goodluck 💚
I had a major knee dislocation I had major ligament reconstruction again then post op injection major uhm drug reaction now Epi pen the back sprain and steroid injection then bulging c3 c4 neck then ankle sprain then I was dislocating my left elbow crutching post surgery then my right hip with my dysplasia my subluxing then I fell in my shower end up with a major concussion fluid in my brain unconscious post concussive for over a month I thought the pain would never end..
all from opening my fridge twisting and dislocating my knee cap snapping my patella ligament and everything got off balanced and spiraled
But hey guess what? I’m ok now again.
Ehlers people take a lot longer to heal, I was out of work for over six months and went through hell, I still haven’t gone back to the gym, but I’m not having massive pain attacks and I’m able to function.
It does get better it does get worse because we just are special.
I have a nickname, “gumby”
I have good and bad months not days.
But there is good
Hope this helps
Hang in there ❤
Also not for nothing I am a critical care nurse and I’m back at it happily so 😊
I was on a benzodiazepine. I thought that was making me sick. Now I'm in trouble... Now my family don't believe me...
I was party trick girl reluctantly lol
I am from India I need treatment please help me
There is no help in India
@@tukitaki6936 srijani Bera?
@@trollmatroll8621 not the same sorry
Hi dear, please check orthopedic clinics in your city, these days some do provide the Prolotherapy treatment. Not sure which city you live in but, for sure there are treatment centers in Maharashtra, Tamil Nadu, Hyderabad. Please check it out.
@@geethaguthikonda9198 hi maam, just asking do u believe in prolotherapy?
Thank you for sharing ♥️ from Gafsa Bux 🇿🇦 ♿ 🦓 🌈
To follow up on my comment, just by being skinny I always felt weak and frail, and the reality is I was and still am weak and frail, and those feelings are amplified by the fact I permanently have aches and pains, people just think I’m soft and exaggerating, I will kill myself soon
Get braces on all joints: ankle, knee, wrist, elbow, and ESPECIALLY neck. I feel much better already doing this!
Ask your dr to see a pain clinic and let them know you think you may have EDS. Be clear as to how your pain affects your ability to function (were you able to bathe, cook for yourself, do laundry, buy food, etc. Keep a diary or better yet, make a grid with check boxes for activities you can and can not do each day and record any triggers that cause the flares and how long they last (I have had good success with the charts with docs). Long term pain that is not treated can cause what is called pain centralization which are changes in how your brain processes pain. Dr.s can prescribe anticonvulsant drugs (like Lyrica) which is FDA approved to improve nerve pain. The antidepressant Cymbalta also is approved for pain so when it is recommended, it's not just for depression. Ketamine infusions helped me by close to 70%. Insurance does not cover it and it is very expensive. It does not eliminate it, but I also have CRPS which is more common in people with EDS which is pain centralization on steroids.Don't let anyone talk you into implantable pain nerve stimulaters as they are more likely to move out of place with our unusually flexible spines and be ineffective or even cause more pain. We need to avoid surgeries if at all possible. EDS patients also have larger amygdalas which is the fight or flight center in the brain. Magnesium threonate is a calming nutrient that most of us are deficient in, and the threonate type is the only type of magnesium that crosses the blood brain barrier. Pain drs are more likely to approve the partial antagonist opiate, bupenorphene (same drug they use for opiate withdrawal and maintenance) which has a protective effect to prevent overdoses by not attaching to all the opiate receptors. It has been shown to be as or more effective than regular morphine for people with chronic pain centralization (it acts on certain cells that are the gateway signaling cells between the body's periphery and the central nervous system called glial cells, and regular morphine does not). Ask to see a physiatrist (MD that specializes in body mechanics). Call around first to find one that sees EDS patients. They help with recommending bracing and will look for things rheumatologists will not. See if you can get a recommendation to see a physical therapist that does water therapy. Prayers are with you today, my friend. I tried to off myself failed, yet am 70% better now and want to live again albeit carefully. I was bedridden for 6 years and in a wheelchair for 9. I can walk unaided now but wear braces all over.
I don't want to know how you treat it find a dam cure
There is no cure at this stage. The research and treatments available are at the cutting edge of the science. It will take time and progress is being made in understanding the disorder and how to manage the symptoms of eds. We must do what we can with what we know for now. It is a genetic disorder and at this time it is accumulative damage which we must attempt to avoid. I wish you all the best 💚
🦓 Thank You 🦓
Way too many interruptions by the reading panes.
They were titles for each separate item?
Ketamine RFA
It’s crazy how I only know one person who knows what this is.
It’s such a weird condition. I have two forms(classic and hyper mobile) and back in early to mid Highschool there was a lot of pain, but through lifting weights I have been able to keep pain to a minimum. The way I think of it, I build up my muscles to keep my joints in place, but still I have small weaker muscles that when get overworked cause injury (especially shoulders)
Classical cancels out the hyper mobile type. Hyper mobile type is for people who have an unknown genetic cause.
@@Catlily5We paid for the genetic testing to be sent to the US to rule out any of the other subtypes even though we knew my wife had hEDS. There is research and progress being made to find the genes for hEDS, it is likely that hEDS is an umbrella term which will be divided up into the different presentations and comorbities. All we can do is what we can with the information we have and hope they can isolate more genes which are associated with the presentation of hEDS. Progress is being made, don't give up hope 💚
@@siobhanstaats3234 I agree!
@@siobhanstaats3234 They offered me a genetic test for $1000. But I can't afford it. Thanks for contributing to the research!
All thanks to Dr Aba for curing me from EDS Am forever grateful
EDS isn't curable.
@@blondbum yea it’s a chronic incurable disease..
The link in the description to Dr. Rabago’s assessment of this treatment protocol is broken. Here is the correct link. www.hqsc.govt.nz/assets/Consumer-hub/Partners-in-Care/Publications-resources/Prolotherapy-review-letter-Dr-Rabago.pdf
Thanks for letting us know. We've updated the link in the description.