I feel so much less alone now.

My posture is your standard hunched-over-the-computer-in-my-cave, which I suspect doesn't help. No idea about Ehlers-Danlos syndrome, but I do have hyper-lax joints...always something cracking or popping. I feel like my arm kind of goes out of its socket at times.

I've got appointments with both the vascular and ortho docs coming up in the next few weeks. How do I go about getting properly dxed, or at least have my concerns taken seriously?

My GP originally suggested that my cold hands were just "nerves"--something I was more than happy to believe until the other symptoms started. I feel stupid for doubting myself. Hoping it's not too late to somehow get this resolved...

See a vascular surgeon/specialist and describe all your symptoms including positional aspects of them.

I've noticed many avg MDs don't really like it too much when patients come across as knowing too much....

IMO they don't like to hear -
I read about "insert condition" online...
I think I have TOS

so even after you read and absorb all this info, act like you don't know it all.
but try to ask questions that lead to discussions..
mainly use the knowledge to decide if a doc or PT or DC or any therapy they suggest is any good or not.

And self care is a big thing- no single MD, DC, PTor program plan will fix you all on it's own - you have to do the home work too.

I've had good luck just saying "Can you screen me for condition X? I'm concerned I could have it." In doing so, I'm asking for their help while implying they have the expertise since I want them to screen me and render their opinion. Good reactions so far.

Just curious. Do you have Raynauds Syndrome?
That was one of my first symptoms. Years of cold hands and extremities. Developed white fingers in the cold winter months etc.Which escalated to probs with hand pain, wrist pain ( carpal tunnel), elbows, shoulders and so.
Doctors made no connections and a TOS dx took 6 yrs.
You know your symptoms and how they make you feel. Don't let doctors intimidate you.
I WISH I LISTENED TO MY OWN ADVICE!
Best wishes SD38

YES. This whole thing started with cold hands and a dx of Reynaud's. I don't know what to do, I feel like the arm weakness is slowly, inexorably getting worse...ugh. Will update as I see more doctors.

An interesting thought : I wonder what would happen if you ask your Drs if they access NeuroTalk????????
Just to see if they have an understanding or appreciation of what these symptoms are like for us suffering them.
FOOD FOR THOUGHT. I'm gonna pose that question to mine I think as I'm sick and tired of their dismissive attitude.
GOOD LUCK Vivi_Fruit

all of this is spot-on

srsly learn about anatomy. its taken me a year (probably bc all the pain leaves me in total head fog) to even halfway understand the mechanics of any tos, much less, my own body

raynauds is really common amongst hypermobile people

i don't have it, i dont think *knock on wood*

get your b vitamins, vitamin d and magnesium checked. they aren't the causes but deficiencies don't HELP anything.

If you suffer from Raynauds then you definately know that you have it...... the cold causes EXTREME pain and the blood supply totally switches off in the fingers and even the nose or toes. They turn a range of colours from red, blue, or white ( death white ). Its horrid. Best way to cure it is basically prevention. At all costs keep the extremeties as warm as possible in bad weather..... plenty of woolies and heat pads.