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Ehlers-Danlos Syndrome Online Support Group

Flexifemale!

#1

I have been called many things in my lfe, but a loose woman???

That in the literal term, I am not. But in the slightly bendy imagination of mine, I did always feel that I was loose limbed.

It wasnt until last year that I finally had a diagnosis of Ehlers Danlos, at the very very young age of 60!!

I guess in the old days, there was not enough known or anything known about EDS, so the fact that i didn’t start walking until nearly 2, and the fact that I walked around on my knees, didn’t really set any alarm bells off. Although in asking my 88 year old mother about my oddities, she did say that there was something different about me Thanks Mum.

I had special shoes designed and made for me and I could do weird things with my joints - a party trick or two up my sleeve! Never mind the damage I was probably doing

After numerous surgeries on my ankles, feet and wrist, and the occasional hint from the surgeons that I was hypermobile, I was finally diagnosed last year, at the age of 60!

Now, I am in constant pain, and still learning about all the other aspects of hEDS - mitral valve prolapse, POTs, cysts, kidney stones, intestinal issues and the list goes on.

I feel totally unsupported by the health professionals in that I do not have someone who I can seek support and information from. I am in the process of having ECG’s arranged and a TILT test done but nothing helps the absolute exhaustion and chronic pain.

I love gardening, walking along river beds but this has all come to a halt. Aquatherapy helps, but one class in a week, is more than I can manage.

Would so love to be able to talk to someone of a similar age and who has walked the walk, or is walking the walk. Hope we could encourage one another or offer advice to each other.

I have rambled for too long, but it so all encompassing at times.

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#2

Hi Flexifemale!

Sorry I didn’t notice your post, I’ve been chatting recently with another member on here and have been neglecting the main home page. So- WELCOME! :slight_smile:

I’m a bit younger than you if you want to look at a calendar, though honestly with all my aches, pains, meds, doctors I’m supposed to see blah blah blah I tend to have more in common with people that aren’t in their 40’s. Those people (for the most part) typically don’t understand when I have to bail due to fatigue, or that it’s not that I wouldn’t enjoy going out and having several drinks it’s that I’m playing Russian Roulette having one drink every now and then. They fall down and bounce back up, I fall down (which happens way too often) and I need to take it easy for several days.

I love gardening (when able- in the shade, perfect weather conditions), taking pictures, spending time with my pets and indoor plants, knitting when I remember to do it, playing word games, drawing and writing.

Absolute exhaustion- naps, stay hydrated, good nutrition (ha ha ha) and taking it easy.
Chronic pain- I take drugs (I mean medication).

My hEDS dx is a bit odd. I’ve been sitting in limbo for a few years. Got a new Internist due to a new medical issue in life and I carry this nifty printed out page with me that lists all my dx’s, drs and meds as well as allergies… I give this to any new doctor in my life. Next to Hypermobility or EDS I had listed (depending on which doctor you ask). When I read over her medical notes I saw listed clear as day: EDS (confirmed) YIPPEE. Okay, she didn’t test me, she didn’t discuss it with me, it’s probably a goof- don’t care. For me it doesn’t change a thing about my current life, but I have listed by a doctor that I have it- debate is over as far as I’m concerned. Why does it matter- I bend ‘wrong’ and a ‘tear’ easily, and honestly with the other things wrong with me I wish I could afford the genetic testing to really know. I think for me it is just hEDS and not one of the really scary types, but now that hEDS is on my medical file if finances change I’d really like the tests to see if I have the scary types.

Speaking of the scary, it’s good that you’re researching prolapse, POTs, cysts etc… please don’t get all caught up with these. They are possibilities, not absolutes and they can happen to anyone.

Sorry if I rambled on a bit, I do that from time to time… I did wish to welcome you to the group though and I hope that you know you are certainly not alone.

Hope to hear from you soon.

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#3

@Helensylvia, welcome! It looks like your post went up a while ago, so sorry that the replies are just starting. I’m a newer member in this forum and although younger, I can definitely relate to the frustration and pain.

It is good that you’re having the tilt table test and ECGs done. There are a lot of times that EDS and POTS go hand in hand. I don’t have the POTS portion, but have autonomic dysfunction. The path to a diagnosis is frustrating and honestly may not give you a firm answer.

Your aquatherapy is actually one of the recommendations that many doctors will give to patients. We are able to tolerate more exercise in the water because it is less work for our bodies. Also it decreases the pull of gravity, so it helps increase blood flow back to the heart and brain.

I can definitely relate to the absolute exhaustion of doing even just small tasks. Even taking a shower is enough to wear me out for the rest of the day. It’s definitely frustrating and tests our patience.

You aren’t alone in this. We have all been brought here by different circumstances, but all are looking for some support and being able to connect with others. You’re in the right place!

Now I’m the one rambling! :slight_smile: Take care and feel free to reach out!

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