Thanks en bloc. You describe it really well. It's of some comfort to know that the symptoms aren't reflecting heart failure, even though it feels that way. You mirror what the cardiologist said in that the symptoms are extremely dramatic. It's of comfort to know that there are options for slow heart rate too. I recall you have a pace maker. It sounds frightening to have that. Does it give you comfort to have it? I would love to know how you have managed with this for so long.

I'm so grateful to have this group. The mental and emotional loneliness of this sort of thing is excruciating at times.

Hey JoannaP79, I'm KATO. New here.to the forum
I'm also newly diagnosed with SFN and Autonomic Nueropathy. I've had it for at least 3 years but did not know what it was. I seen in a post lower on the page you responding to questions about your heart. In the year 2000, I had an ablation. I had sever heart issues. The doc said 10 years earlier I would have had to have open heart surgery. I have always had a low heart rate
Resting rate around 40, active rate around 60. It was very hard.for me to get my rate up for the stress test (I didn't ever get it high enough ). My heart would beat so hard that body would shake with every beat. I wore heart monitors on several occasions but did not get recorded symptoms until I wore one for 30 days. The first attack I recorded my heart rate was over 300 beats per minute and lasted 3 to 4 hours. I thought I would surely die. After an E Study and mapping, I had an answer. It was explained to me like this. I have a natural pace maker in my heart (we have several ) that was miss firing. Instead of the electrical current going from top of my heart to the bottom of my heart the current was going in circles in the top part of my heart. The bottom of my heart was not working during these attacks. The doctors got me to the hospital quickly and done the ablation. I think it saved my life. I had the symptoms for a few years before it was diagnosed. They thought I had micro valve prolapse and several other malities that were ruled out. One doctor even said I needed to see a psychiatrist. I indeed felt verified when the real answer to my problem was vetted. I now only have mild attacks occasionally. I also was told whole life until I developed arthritis nearly all over, that I was double jointed. My knee caps would go almost to the back of my knees. I could dend my elbows in the wrong direction, as if I had broken wings. I could bend my thumbs backwards and touch the back of my hands. I could do several things such as this. I've never thought much of it. I now read about you and Healthgirl and you subsiquint diagnosis and I wander if I should be investigated for the same genetic disorder. While.i was having the heart problems and after, and some now, I would pass out for no reason. I would be standing and talking to someone and just fall down unconscious. I would guess I passed out 18 to 20 times? I also what I called blacking out nearly every time I stood up. My vision would go black and I could hear but could not speak or move. I am still blacking out. Does this sound like it could be due to the Autonomic Nueropathy? If it is, then I have been suffering from this for a lot longer than I thought. I am also having bowel issues. I take Miralax every day and now I have to take stimulate laxatives morning and night just so my bowels will move. I have been in excruciating pain for over a week and a half in my joints. It feal like they are separating and I cry out in pain. This and the bowels are new symptoms. I also have been dizzy, had blurry vision and have been stumbling. I have to set in the floor or on the ground wherever I'm at because I'm about to pass out. Can either of you or anyone, please lead me in the right direction. What should I ask my neuro, does all of this sound like the genetic disease that Healthgirl is suffering from? I know your not doctors but you seem to know as much as one. I still have not heard from my blood test and currently do not have a neuro appointment. I've called them 4 times requesting test results and an appointment because of new symptoms but have not gotten a return phone call. Please help me. Thank you, God bless you all. KATO

Does anyone in your family have similar but milder symptoms as you? Have you been checked for mixed connective tissue disease?

My daughter, grandaughter and my mother. We are all a little different but share a lot of symptoms. I by far the worst. Thanks. No, I have not been tested, as far as I know. Still haven't heard from blood test.

My father also had parkisons. I don't know if that is beneficial knowledge or not.

There is no blood test or DNA test yet for hEDS. It is clinical and is proven by a series of criteria and depending on questions asked about your family.
So I assume that your female relatives have symptoms worse than yours... maybe minus the neuropathy. Would you mind telling me what their symptoms are? It would also be to your benefit to compile a list of symptoms of theirs and yours for the doctors so you can be seen by a geneticist as they are hard to get into. I will be happy to share any information and answer any questions that I might be able to help with on this long journey. It is hard to find someone who is in such a similar situation.

Yes it is for genetics. It is neurological, so that would lead them to check for scn9a- 10a mutations.

Hi Kato. From what I'm reading it sounds like autonomic neuropathy. But it's hard to always know as I've been so confused by what is happening inside.
Id say it is definitely worth seeing someone about the flexibility. I'm not diagnosed with this yet. The next step are tests to confirm POTS. The cardiologist I saw about POTS said a very high proportion of people he sees with POTS have hypermobility. So it is definitely worth seeing someone else. I doubt a Neurologist will help. You will need to find a good rheumatologist who knows about EDS. I have a rheumatologist who told me not to go looking for it. That's no good for anyone. So look online to find recommendations. I've just joined the EDS Facebook group. You will get recommendations for people to see for a diagnosis on there. I've found it really helpful.