2 years into be chronically sick . ( always had some issues with longer lasting colds and chest infection as a kid) In a wait list for neurological testing , specifically for EDS . Also being checked for lupus ( as my nann had it ) You a brave ❤ thank you for sharing your story
Thank you for taking the time to share yours. I really hope these waiting lists shorten and you like many get the diagnosis they need in order to be believed to get the right treatment. I hope it all works out for you. Good luck on this journey.
I must agree, Google and the public forums have been tremendously helpful. As you described, much of how doctors responded to my condition as was dismissive, as if I was exaggerating. Thank you for sharing this and creating another safe space. I truly appreciate you and what you have created. 🤗🌻
Thank you so much for this. I cannot explain how motivating it is to know that this space is seen as a safe space. This helps to keep me going. Thank you for taking the time out to share and help me along too. 😊
Thank you so much for sharing your journey with us. You are such a blessing to us. You are so intelligent and super strong. I have learned so much from you about my PCOS, endometriosis. I believe you are going through this journey for a reason. To give hope to the hopeless. I wish you good health. May more information be revealed to you regarding your health so that you can improve the quality of your health. Much love from South Africa.
I was finally diagnosed in 2018, I was SO happy! But shocked! Is it wrong to be happy??? 🤷🏼♀️ but now dealing with learning to live now, I was a belly dancer, but my Orthostatic tachycardia and being out of breath all the time...it’s tough. I even taught martial arts! Uhg!! Now I really want my life back, my daughter was recently diagnosed as well. It’s a weird life...
O' I've never felt it wrong to be happy when you're diagnosed. Somehow it's a relief because at least now we can focus on the treatment of it. It can be very hard when we lose the life we built - but unfortunately, we've gotta re-build. I wish you all the best with your health - I hope you're able to figure out a formula that helps you lead a full life. Take care.
I can respect that feeling. Not wrong to be happy that you finally have an answer. It’s is real and validating. I felt the same with my diagnosis. I was scared going in. Shocked that it was true, but grateful to know. My doctor said, “there will be a mourning process, but things can be managed.” I didn’t really understand what she meant. Feeling happy to know I’m not crazy or a hypochondriac. Mourning hit 3 months later during a flare. I wanted my life back, I should be able to play physically with my kids. Frustrating, but it is a blessing I am at least able to be here with them and mobile, with pain, but still very fortunate. Hugs to you and your daughter. Knowing is half the battle. I am SO glad she was able to get diagnosed sooner. Might be able to help mitigate some of the symptoms before they become chronic. 🙏🏽☺️🌻
Hello Shruti... I have been searching a lot about you these days. I don't know where you are from but I am from India (Bihar) My 12 year old son has all these symptoms of eds(hypermobile joints and constant headaches) . I have been to many doctors but they say nothing. There's so little awareness regarding eds in India. Being a single mother, I am totally devastated. I am not sure whether it is eds or some other problem similar to it. Will you plz suggest me some doctor. Waiting eagerly for you response.....
Hi Soni, I'm really sorry to hear that you and your son are having to go through so much. If you can email me on footprintsnoboundaries@gmail.com, I would be happy to send you details of my doctor.
Yeah, the symptoms of Lupus and EDS can be quite similar. In Lupus, the autoimmune system attacks and weakens the collagen in the body, while EDS causes the collagen in the body to be weak to begin with. Sorry your mum has EDS. Since it's genetic, there's a 50% chance that you'd have it as well. Definitely find a knowledgeable doctor who can properly diagnose you.
Which type of Ehlers Danlos do you have? I have hypermobile type, and went through a lot of bad experiences in the healthcare system until I was finally diagnosed with hEDS at age 38.
Oh - I see that you also have hypermobile type. How are they treating your POTS? The top medications for EDS POTS are beta blockers, Clonidine, Guanfacine, Ivabradine, and Mestinon. I reacted adversely to beta blockers, but I'm doing great on Mestinon and then a small amount of Clonidine before bed. Calf compression sleeves like marathon runners wear are also super helpful.
![Treatments to Manage My Ehlers-Danlos Syndrome - Part 1 [CC]](http://i.ytimg.com/vi/4Z7twB3czKI/mqdefault.jpg)
![Treatments to Manage My Ehlers-Danlos Syndrome - Part 1 [CC]](/img/tr.png)
![My Endometriosis Story | How I Was Diagnosed with Endometriosis [CC]](http://i.ytimg.com/vi/Cfs_XoWhMTA/mqdefault.jpg)
![My 6 Diet Changes for Endometriosis & Ehlers-Danlos Syndrome | Endo Diet [CC]](/img/n.gif)
2 years into be chronically sick . ( always had some issues with longer lasting colds and chest infection as a kid)
In a wait list for neurological testing , specifically for EDS .
Also being checked for lupus ( as my nann had it )
You a brave ❤ thank you for sharing your story
Thank you for taking the time to share yours. I really hope these waiting lists shorten and you like many get the diagnosis they need in order to be believed to get the right treatment. I hope it all works out for you. Good luck on this journey.
I must agree, Google and the public forums have been tremendously helpful. As you described, much of how doctors responded to my condition as was dismissive, as if I was exaggerating.
Thank you for sharing this and creating another safe space. I truly appreciate you and what you have created. 🤗🌻
Thank you so much for this. I cannot explain how motivating it is to know that this space is seen as a safe space. This helps to keep me going. Thank you for taking the time out to share and help me along too. 😊
Thank you so much for sharing your journey with us. You are such a blessing to us. You are so intelligent and super strong. I have learned so much from you about my PCOS, endometriosis. I believe you are going through this journey for a reason. To give hope to the hopeless. I wish you good health. May more information be revealed to you regarding your health so that you can improve the quality of your health. Much love from South Africa.
Thank you so much. Very kind of you to reach out like this.
More power to you girl❤️❤️
Thank you!
I have all symptom hyper mobile eds but genetic say I haven't please help me
I was finally diagnosed in 2018, I was SO happy! But shocked! Is it wrong to be happy??? 🤷🏼♀️ but now dealing with learning to live now, I was a belly dancer, but my Orthostatic tachycardia and being out of breath all the time...it’s tough. I even taught martial arts! Uhg!! Now I really want my life back, my daughter was recently diagnosed as well. It’s a weird life...
O' I've never felt it wrong to be happy when you're diagnosed. Somehow it's a relief because at least now we can focus on the treatment of it. It can be very hard when we lose the life we built - but unfortunately, we've gotta re-build.
I wish you all the best with your health - I hope you're able to figure out a formula that helps you lead a full life. Take care.
I can respect that feeling. Not wrong to be happy that you finally have an answer. It’s is real and validating. I felt the same with my diagnosis. I was scared going in. Shocked that it was true, but grateful to know.
My doctor said, “there will be a mourning process, but things can be managed.” I didn’t really understand what she meant. Feeling happy to know I’m not crazy or a hypochondriac. Mourning hit 3 months later during a flare. I wanted my life back, I should be able to play physically with my kids. Frustrating, but it is a blessing I am at least able to be here with them and mobile, with pain, but still very fortunate.
Hugs to you and your daughter. Knowing is half the battle. I am SO glad she was able to get diagnosed sooner. Might be able to help mitigate some of the symptoms before they become chronic. 🙏🏽☺️🌻
Hey hope you are keeping well I can get your doctor’s details who treated you in mumbai
Dont u have subluxations???
Hi Rashmi,
Yes I do! My elbow, fingers, ribs, jaw - they've all subluxated!
Hello Shruti...
I have been searching a lot about you these days. I don't know where you are from but I am from India (Bihar) My 12 year old son has all these symptoms of eds(hypermobile joints and constant headaches) . I have been to many doctors but they say nothing. There's so little awareness regarding eds in India. Being a single mother, I am totally devastated. I am not sure whether it is eds or some other problem similar to it. Will you plz suggest me some doctor. Waiting eagerly for you response.....
Hi Soni,
I'm really sorry to hear that you and your son are having to go through so much. If you can email me on footprintsnoboundaries@gmail.com, I would be happy to send you details of my doctor.
Wow I thought I had lupas but then my mum said she has this n yeah I'm in tons of pain
Yeah, the symptoms of Lupus and EDS can be quite similar. In Lupus, the autoimmune system attacks and weakens the collagen in the body, while EDS causes the collagen in the body to be weak to begin with. Sorry your mum has EDS. Since it's genetic, there's a 50% chance that you'd have it as well. Definitely find a knowledgeable doctor who can properly diagnose you.
That's not good :( ...I hope you're able to find the right doctor and have a team of medical professionals to help you.
Exactly the same.
Which type of Ehlers Danlos do you have? I have hypermobile type, and went through a lot of bad experiences in the healthcare system until I was finally diagnosed with hEDS at age 38.
Oh - I see that you also have hypermobile type. How are they treating your POTS? The top medications for EDS POTS are beta blockers, Clonidine, Guanfacine, Ivabradine, and Mestinon. I reacted adversely to beta blockers, but I'm doing great on Mestinon and then a small amount of Clonidine before bed. Calf compression sleeves like marathon runners wear are also super helpful.
Hi...
I've done a video on my experience with POTS - I will link that here. Hope it helps.
ua-cam.com/video/izEdrUI1zKM/v-deo.html
I can correlate yr story .
I'm so glad you could relate :)