Just saying 'hi'

[Muddle-h33d]

I have EDS, fibro, OA, cfs and all the complications that go along with that little lot... and then there were those things that just couldn't be explained... turns out its been FND all along. I'm in the 'mind blown' stage, trying to understand what it's all about..... That's what it says on my profile page thing. So I don't have any specific questions or statements just now... I just wanted to say hi! Got to start somewhere, right?

[M3rry]

Hi and hugs - this is a nasty but then with EDS you've been through the nasty already.

[Muddle-h33d in reply to M3rry]

I kinda feel the EDS isn't as nasty though... apart from the gastro problems it's given me. The FND thing is just confusing me all the time... you just don't know what's coming next. I thought EDS symptoms could be varied, but this.. 😬

Ps... Thank you for the hugs!

[Redbeard_33]

Hi 😁👍🏼and welcome to FND 😒.

Try to take it easy. How long were you dealing with the other things?

[Muddle-h33d in reply to Redbeard_33]

Hey 👋

I've been dealing with EDS all my life but didn't get diagnosed til a few years ago. The Fm since about 2000 I think, the OA is the last 3 years or so, RLS since my 20s and I think the FND came about following a viral issue when I was 18months. Its difficult to work things out as so many of the symptoms are crossover. Having the FND diagnosis has begun to help clarify things for me though.

How are you finding your journey through all this?

[Redbeard_33 in reply to Muddle-h33d]

It's that clarification that helps eh 😉. You'll have some reading up and YouTube vids to watch now but don't let it bog you down, take your time and i think being here will help you feel alittle better knowing you're not alone Muddle 😁👍🏼.

It's been frustrating tbf for me, only got a diagnosis 4 years down the line 🤦‍♂️. Now just waiting for next steps, it's all a waiting game.

How you feeling today Muddy?

Lee

[Muddle-h33d in reply to Redbeard_33]

`Muddy`... suits! 🤭

Had a crappy night as usual, so ready to sleep again, but don't want to lay down cos I'm feeling sick, as usual. I have to wait for that to pass so I can take my meds. One big belch. Like a pirate! .... Maybe that'd do it! 😂

How's your day taken off?

[Redbeard_33 in reply to Muddle-h33d]

Ahaha! Oh Muddy i wrote, muddle i meant but now it's a thing 😂

Those sick days aren't nice. It sounds like vertigo. Maybe a trip to doc could give you something for that, although being Sunday it'll be a tomorrow thing 🤦‍♂️

I'm okay, stiff legs and hip as usual and arms feeling the weight of my mug of tea, weakness infuriates me. If the random pain in shoulders and hips calms down I'll be slightly more forgiving to the FND 😂. Meds took, now to stay awake and enjoy the day.

[Muddle-h33d in reply to Redbeard_33]

Well I've had what I think is vertigo since my teens. I even get giddy lying down. I've talked to Dr's about it but never been given meds. Chances are I'd not get on with them. I am so sensitive to meds I have to cope with most of my symptoms without meds. The nausea is a bunch of digestive issues because of the EDS. Although I wouldn't be surprised now if FND has a role to play in there somewhere somehow.

Well I hope you get to do something good today Lee.

[Redbeard_33 in reply to Muddle-h33d]

Got some gardening done now a little of Lucifer 😉👍🏼

Yeah it could well have been the FND. I think people who suffer from MS also get vertigo 🤔. Have you been checked for that? You may have both 🤷‍♂️. FND is annoying enough but if it's also MS then the doc could help you live better.

Lee

[Muddle-h33d in reply to Redbeard_33]

Yes, in 2000 when the paraesthesia episodes began they all panicked but when nothing came of it, no one seemed bothered. I guess inexplicable numbness isn't a big deal. But they really should have been thinking about the fact there were a few unexplained things by then. And individually none of them are too awkward I guess, but put them all together it starts to make life challenging, but doctors seem to lose sight of this. They deal with issues individually and they work in the main, on individual issues. But a body is a a whole thing and the whole picture should be viewed. It would help if they communicated as a group. I guess 'the system' just can't accommodate for that for the majority.

Gardening sounds like it's been a good day.

[Redbeard_33 in reply to Muddle-h33d]

Can't argue with that Muddy, the coordination with health professional is pretty bud. I went to the docs when i couldn't write anymore (still can't) and for some reason that was never passed on and they kept giving me stuff to fill in 🤦‍♂️. That's a little thing though compared to your issue, just an example.

Ask for all your medical records to be provided to you and see what's going on. I've just done that recently. It seems someone is messing up somewhere. All that information is available to you so don't feel intimidated by the process.

The gardening was nice but like everything it's the afterwards that gets you 😒😂