Pots, eds, no doctor. Help :(

[Sadgirl1]

I had POTS symptoms more than 15 years. People mention eds but i dont have hypermobility, dislocation issue(i dont mlve/worl out much though). Lately i wonder about collagen issues. big long stretchmarks on shoulder, also thighs, etc, transculent thin skin, visible and a little bulging veins on hands arms foot, veins on face, sometimes joints paint cracking(possibly also frm low vit d), easily bruising(probably due to thrombocytosis) muscle issues, high myopia with flashes floaters, crowding teeth, thin hair, sunken cheeks, keloid, hyperathropic scar, back problems, palpitation heart issues. i want to ask with these picture. Is my skin normal or is this what stretchy skin means?

I try to measure skin on Palm-side/inside forearm(first pic) and it reached 1.5cm. Maybe a little more but im not sure.

The problem is EDS, POTS arent known here

Please help does this sound like EDS?

Or maybe being skinny, long term of:

lack of sleep, nutrition(also got gi issues), cortisol, stress causing these.

more pic of inside forearm, palm, neck, veins

Can only post 1 pic

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[cyberbarn]

It is worth remembering that the doctors whose names were given to this condition were dermatologists. Skin manifestations are as important as joint hypermobility, but many forget that because all those with dislocations and pain get all the attention now. Rheumatologists would look at the joints only and dismiss all the other symptoms that there patients were having.

Have you seen the Royal College of GP's EDS toolkit yet?

rcgp.org.uk/clinical-and-re...

Your GP can now use that to make a diagnoses, and it might be that you don't have the hypermobile form of EDS but one of the other ones, (not the scary life threatening ones, but the classic or classic like) where the hypermobility of the joints isn't so prominent.

And to answer your question, it does sound like you have a connective tissue disorder, so it is worth taking the RCGP toolkit link to your GP and working through it with them.

[Sadgirl1 in reply to cyberbarn]

Thanks for your answer. I just found out that i have a little hypermobility. I can bend pinky, index finger backwards, thumb to forearms, palm touch floor without bending knees, w sitting. I didnt know that though. Does that mean its more likely i have EDS?

I try to ask the doctor and hope they want to investigate it but i cant expect much. Also genetic testing is really ecpensive is it? And its not available in.l my country i think.

[cyberbarn in reply to Sadgirl1]

Yes, it sounds like it is more likely that you have EDS so you should pursue it as it could explain all the other things going on for you.

As for genetic testing, I don't know which country you are in, and yes, it is expensive, but it might not be necessary. The vast majority of people have hypermobile EDS or the sister condition Hypermobility Spectrum Disorder and for that there is no genetic test anyway, so if you fulfil the criteria for that you wouldn't get a genetic test. It is only for the very rare types that they can even test and even then they often don't if your symptoms are clearly for that type.

Good luck in getting some answers!