Ehlers Danlos Syndrome (EDS) & HSD, calling all types!
Hello,
I am looking for a community of EDS and HSD folks.
I am waiting a confirmatory second DNA test for Vascular Ehlers Danlos Syndrome. Currently I am experiencing weakness in the extremities, further slipping of joint articulation even while resting, unregulated body temp and blood pressure,
POTS, migraines, menstrual complexities, chronic widespread pain, fibromyalgia, and on the verge of depression.
Interested in more discussions like this? Go to the Bones, Joints & Muscles Support Group.
So is that vascular Eds you have
From what I understand ... " In both Classical and hypermobile: skin can be velvety or hyperextensible" ... so no I do ot consider this to be vascular type. Again I see a whole lot of complications in the diagnosing process and think it better to focus on what I csn do to live with the physical oddities I have. The bumping bruises do not seem to cause othe issues and do heal relatively fast. They don't even hurt ... are just bruises. I am more careful about any activity that might create excessive hyperextension and do have daily movements to fully allign the SI Joint as well as gentle stretches to not overdue muscles around my joints.
From what I have read ...the total diagnostic criteria as stated today is so complex that most Drs. do not manage to deal with it, let alone patients.
Epsom salt baths……helps w bruising….!
Hello, I am a 22 year old South African Female.
I went to see an internist in September to figure out why I have chronic pain, a semi-nonfunctional bladder, flank pain, chronic fatigue, PCOS, constant headaches and joint pain and also why I haven't been able to eat lately without having a flareup. We went through my whole medical history and I got diagnosed with chronic gastritis and a little bit of atrophy in my GI tract (not severe). At the end of our consult, we talked a little about my hypermobility and vitamins to prevent arthritis. I asked her about EDS and she said I fit the profile but we should keep it in the back of our heads for now. I am going back to see her for a follow-up in February. Is there a way to keep track of all my symptoms for the next follow-up?
Here is my history in short:
I was a very bendy kid and often complained about growing pains in my hips and legs. I took dance lessons on and off due to severe fatigue and injuries. I developed stretchmarks on my skin when I was about 10 years old and got bullied for it....a lot! I also have eczema and stretchy skin. I was also an A-team high jump athlete in high school but had to stop since my ankles kept getting hurt. I was forced to take horse-riding lesson to try and improve my muscle tone, since my joints were unstable.
The chronic pain started in 2019. My parents often brushed it off and said it was attention seeking since my GP couldn't pick up anything in blood tests. He tested me for various diseases including cancer (multiple times) and said he doesn't know what is wrong with me (he probably also thinks that I'm attention seeking).
From 2019 - present, I got diagnosed with: Hypermobility, PCOS, a neurogenic bladder, chronic gastritis, Joint instability, (TMI) Chronic constipation. All of these diagnosis's were made by separate specialists. I feel like nobody is listening to me and to how severely this is affecting my life. I have a 3 year old son to raise and I feel like I'm in the body of a 100 year-old.
A list of my symptoms:
Joint Instability
Joint pain in various joints
flank pain
pelvic pain
neck pain
chronic headaches
sensitive skin
stretchy skin
easy scarring
a lot of allergies to random stuff
GI issues and constipation
Chronic Fatigue
Dizzy spells and fainting - especially when standing up
high resting heart rate
vertigo
Heat and Cold Intolerance
To all the hEDS patients here... what are your thoughts? Resources feel limited in South Africa...
Hi @meganmuller2001 and welcome! I moved your question about the TNXB gene and its relevance in hEDS to this existing discussion:
- Ehlers Danlos Syndrome (EDS) & HSD, calling all types! https://connect.mayoclinic.org/discussion/edshsd-calling-all-types/
I did this so you can more easily connect with fellow EDS-ers like @lovemyfamily2003 @katemschultz @lisafl @jthigpen @4846 @blossom2016 @rjmtwit @terrirussell @jholland @chefdecemberskye and many others.
You might also be interested in follow the EDS expert blog here:
- Ehlers-Danlos Syndrome Blog https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/
Has your diagnosis been confirmed? What are you next steps?
Hello my sister and niece have it. They think I have it. Where do you go to get diagnosed. I heard it is hereditary and runs on the mother's side. I don't know to much about this yet. I have other issues with my health and disabled. Can someone give me some direction on this. Thanks
Hi there- Do you think you have EDS/HSD, or vascular EDS specifically? I have HSD (hypermobility spectrum disorder), but I'm very borderline on the diagnostic criteria between hEDS and HSD.
It is challenging to get it diagnosed because at least in my experience, it's something that many providers consider "outside the scope" of their practice. There are specific diagnostic criteria for each type, and there's genetic testing for every type except hEDS (hypermobile EDS) and HSD. If you're interested, you can find the diagnostic criteria here: https://www.ehlers-danlos.com/diagnostic-criteria/
In my situation, it took years to find a provider willing to assess and consider a diagnosis, but I had PTs who recognized at the very least that I had hypermobility (except they're not qualified to give that type of diagnosis). There are various specialty clinics across the country, but long waiting lists =/ Ultimately, I got into the EDS Clinic and Mayo Jacksonville. I got the diagnosis, but my experience accessing care there has been very mixed, though most everyone was kind.
Do you know how your nieces were diagnosed; maybe that could give you a lead?
I don't have EDS but I have CVID, common variable immunodepression. (Boy in the Bubble Disease) My body doesn't fight viruses or bacteria. I have to do infusions of blood plasma with the gammaglobulins that I'm missing to get other peoples antibodies. It's a very under diagnosed disease. The reason I bring this up is that a lot of people that have CVID also have EDS. When you don't make antibodies there are about four hundred different diseases you can have. You have to have your blood checked for IgG, IgA, and IgM. Usually either a rheumatologist or a clinical immunologist is the specialist to go to. And not just an allergist but one that has extra training in this problem. It just might be something to research
I’m quite positive I have EDS. I’m 65 now and have had most all the symptoms of the hyper mobility type my entire life. Now that I’m aging, there are multiple hernias and organ prolapses thrown in the mix.
Even with hip and rib sublexation, I can’t find a doctor who takes this seriously. I went to one rheumatologist who actually scoffed at me.
I just get along as best I can without the help of the medical community. 😢
Have EDS, all types it seems. As I age, it gets greater control and arthritis pain leads the way. Knowing. Be your own advocate and learn a tu can on the internet. My doctors know a lot about but offer no further suggestions as to dealing with it.