StayAtHomeMom

Sounds kind of like me. I am currently in the process of ruling out hEDS. ANA keeps coming back negative even though it runs heavy in my family (my mom and 2 aunts). My kids and I are pretty flexible so I think it is time to rule it out. If we don't have it then I plan on fighting for a serum catacholmine test (the urine one came up normal twice).

Mine started after a brief run. Haven't felt right since. I suspect I have had it longer though. And my 16 year old was just diagnosised as well so that helps support my theory. I had assumed I felt the way I did because it was a normal response to smoking (started when I was 15). High HR, occasional heart beat skips, heart palpitations (didn't know that was what I was feeling), and exercise intolerance. Even the lightheadness upon standing. It was liveable. Never thought anything of it until it got bad, and then the dizziness and breathing issues started. That was all 3 1/2 years ago. Just turned 30. I think for some people surgery can trigger it due to laying down so much, or depending on the surgery, making the body mad and malfunction. Finding an underlying cause can help with piece of mind and treatment. But most people don't find it.

I get visual disturbances as well. Kind of freaked me out at first but it has become less, especially since my lightheadness has eased quite a bit. Make sure they check for autoimmune. Considering the joint pain and swelling. If you can manage to take a picture of your hands I would. Raw hard data is the best way to "prove" your symptoms. The specialists in dysautonomia are more apt to believe symptoms but other doctors like to dismiss them. Good luck on your next appointment.

There are some naturalist doctors that do take the whole body into consideration, but insurance doesn't cover them. I agree with your statement though. I think that is the hardest thing to deal with.

2 months for a new patient appointment isn't too bad. Due to cancelations it took almost 4 months for my son to get a new patient appointment. Even when I scheduled it, it was 2 months out. My specialist is alway super busy and behind. He has a nurse practitioner now, so that has been helping out a lot. It is definitely worth the wait. When you have a doctor that doesn't look at you like you are crazy, it is the most wonderful feeling in the world.

Not sure about chest straps. I use a Garmin. It can be viewed using a smart phone, computer, or tablet.

I am better in the morning and progressively get worse throughout the day. No matter what I am doing. Most people with POTS seem to be the other way. Maybe something to do with your nervous system just having a hard time during those hours?

I got called for jury duty in the beginning. Good news was I was started on the medication and was called for grand jury. I enjoyed the experience immensely I had a few dizzy spells but I was able to do it. You should be able to call and get excused.

It sounds like you are very lucky. Having those interested doctors makes the most progress. Good luck on your test results.

I haven't dislocated either, that I know of. I will "tweak" things but they usually don't last longer than a few days. How long have you had POTS?

As far as I know the discoloration is the symptoms of blood pooling. I don't get it a lot either. I will when I take a shower but that's it. And I have been told I have livedo reticularis (as well as my son) so maybe that's all my discoloration is.

I agree with a previous post about the metoprolol and melatonin. I also listen to audio books to help me sleep. Someone with a soothing voice. My son is currently going through the same thing. Just make sure you are going to bed and getting up about the same time. Your body should eventually get used to it. A fan might help too.

That is interesting. I thought it presented exactly the same based on your type. I am working on an appt with a geneticist so hopefully I can get in and he can test for my son and I. Not sure which would be a better answer, but hopefully he can give a definitive answer either way.

UPDATE: Based on the personality test I took the other week, it looks like I don't have OCD. My OCD tendencies are just personality quirks. I am kind of excited that I don't have OCD and can go back to it is a joke.

I don't think I have ever had those issues. It is interesting though. I had to look up the first one. I wonder what causes that for you? Just not enough collagen in your skin?

What do you mean by surgical complications?

I am in the process of finding someone to rule it out since my son got diagnosed the other day. Disability is definitely in my future. I currently work part time, but it is a true one in a million job and if it disappears (it is a small struggling business) then I need something to fall back on. I am also working on mental disabilities as well. OCD and ADD. Sports was never my thing. I like watching, but playing was always a disaster. Maybe that is why I have never had injuries that required surgery. Have you ever rolled your ankle but it never sprained? Looking around at other people they injure things fairly easy, but anything to do with my joints have never injured. Thought I was lucky, but these last few years I have been looking at things differently. Oh and also I forgot, my children and I can also grab our hands behind our back, with one arm coming from the top and the other from the bottom. Showed my chiro and he said it was not normal. Scratching our backs are easy

Nope. Mine always showed normal. I would be kind of excited for something abnormal. A lot of my tests come back normal and it is always a let down. I feel like they should find something. What is 5-HIAA?

I have and the only thing I can do is one thumb, and the pinkies. I don't think my knees and elbows go more the 10 degrees further than it should. And I can barely bend down. Interestingly though, if I am sitting I am much more flexible. If standing, there is a muscle or tendon in the back of my knees that stops me. Not sure if it that way for everyone else though. Always thought it was odd. Can you twist your feet so they are side by side toe to heel? My kids and I can, grosses out a friend of mine. Lol.

My next thing I want to rule out is hEDS. I like to use my husband as a "normal" and I have realized that my kids and I and way more flexible than him. My mom is pretty flexible as well and one of my brothers. It is hard to tell with my mom because she has RA but I am thinking her RA doesn't effect her range of motion as bad because she is hypermobile. At first I dismissed hEDS because I have never had to have surgery to correct anything, but most of my joints can pop in and out. And my youngest son showed me one day his shoulders can do it too. He lifted something, relaxed his muscles in his shoulder, and his arm dropped out of his shoulder. I have also suffered from low background body pain (in my joints and bones) for as long as I can remember, popping and clicking joints, and stiffness in my joints. I have had tests to watch for RA added to my yearly testing for the last 5 years or so and it keeps coming up negative. And no inflammation. Not sure if hEDS can cause these things. The other day we were at the doctor's office and my oldest son was sitting on the exam table. He was leaning to the left with his weight propped up on his left arm. He had his hand faced back of it down and had all of his weight on it. It was comfortable and didn't bother him. My husband pointed it out that it was weird. I shrugged. I do it too. So many things we do that is apparently not "normal" .

My mom asked if there could be an environmental link and I asked the doctor the other day, she said no. I suspect I had it as a kid. I have always been more tired then everyone else, high HR (98 sitting, never checked it standing), and exercise intolerance.

It can. Depends on the underlying cause. My 16 year old son was just diagnosised. We have no underlying cause yet. But I am determined to find it.

I may be your hydration levels causing the change. I watched my son's TTT week ago and his was all over the place too. Not sure 100% what causes it though. He was diagnosed with POTS. His HR was definitely elevated. Post an update what your doctor says though. I would be interested to hear.

First I would start with talking to your doctor. They would have an idea about any medications may help. Second I have a hard time with extreme heat. Summers are brutal. In fact last summer there was a discussion about cooling your feet to cool off the rest of your body. Have you tried something similar to that? Finding the triggers and avoiding or minimizing them can help you deal with your body issues. And most symptoms cycle. So just because this is your worse symptom now doesn't mean it still will be in 6 months. Try treating your body like a science experiment. Introduce things one at a time to see what helps and what doesn't. It is different for everyone.

No but when I drink vitamin water with extra potassium it makes it go away. I guess it could be any electrolyte, but I vaguely remember low potassium can cause Charlie horses and it is just an assumption. It used to be both thighs when it first started a few years ago but for the last year or so it is only the right one. It feels like someone is twisting the muscle. I constantly rub on it when it happens to get a little relief. It is kind of odd.