What came first the Fibromyalgia or the EDS? [CC]
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- čas přidán 7. 09. 2024
- What came first the Fibromyalgia or the EDS? | Hi guys I finally felt able to come and talk to you about some recent changes to my diagnosis and have a little health update xx
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Hey guys subtitles are just processing they will be up as soon as You Tube sort them out xx
After 20 years I was diagnosed with fibromyalgia in my early 40s after I was able to figure out what was going on thanks to the Internet. Now, my 16 year old is in the process of being diagnosed with EDS after being diagnosed with POTS. In the process of learning about EDS for them I am realizing that I am the likely genetic link for the EDS. Invisible illness is no treat and getting a diagnosis is like pulling teeth. It’s not an award everyone wants that they have to dole out carefully. The gaslighting in the medical community is exhausting.
It really is so frustrating and I really do not understand why they constantly seem to think we are lying? I hope your daughter gets some answers soon xx
It isn’t much easier in the US. We still have to abide by the insurance network. Some places I have lived different insurances only worked with one small network. Others you have three or four hospital size networks. I have been trying to get to genetics.
Oh really? I think it’s so interesting how difficult it is to get help when we need it xx
Beverley Butterfly yes. Doctors in the US act like we work for them even though we are paying insurance for them to do what we need to them to do. All they want to do is push medications with worse side effects and not find a proper cause first. I am currently fighting to get genetics testing done as I suspect Eds as well.
I heal slowly in keyloids.but i dont bruuse easily velvety though
Spd is for running ti fybromyalgia to
Eds is linked to Asperger's ADHD for myself i had spd as a child.had a fall cfs started then fybromyalgia
Yes the physio told me it's always triggered by something, it's very interesting xx
@@BeverleyButterfly it's the àspergers ime sure
The sleep patt is the autism adhd to for which mike myseof took until 43 diagnosed then the hypomobility on top
Sorry I don't understand what this comment means
Sorry my phone.messes about when upload. I said it's the autism and ADHD part causing the fatigue on top of the heds
@@Truerealism747 oh you have them as well as EDS! I see sorry about that I couldn’t understand thank you for replying
@@BeverleyButterfly yes eds centre London told me it's 80 percent comorbid at least and what causes our central sensitisation.have you had OCD to
@@Truerealism747 not that I’m aware of no
Omg I’ve been told it’s growing pain since I was 9 I’m now 17 and they’ve only just started t
To get it’s not growing pain. They’re now trying to tell me I have rheumatoid arthritis even though I’ve been tested 3 times and I’m still negative smh.
Maybe mention EDS or fibromyalgia as possible reasons and maybe they could look into those? I only say because I was told they were just growing pains, I hope you get some answers soon xx
@@BeverleyButterfly I’ve brought it up a few times but my local practice is awful, I keep going back though so they’ll have to listen eventually lol. I turn 18 soon so hopefully they’ll start taking me more seriously then? We’ll see lol. I’m going to take a list of all my symptoms and print out the criteria for fibro and EDS too and make them look at it and compare my symptoms too I think. Thank you for making these bideos btw!
@@Vincentmacdonnchadha that is a good idea taking official research and statistics etc can really help but I so hope you get listened to and find out the truth soon. It took me 30years to get answers so don’t give up you have more access to answers than I did so good luck xx
Just lost my mum.last year to severe ms obvously heds asperger's my grandfather had it and his mother and grandmother but not a clue until last two years diagnosed at London were you? Muscles are worst upper body
You are looking great. Everything ok with you?
Yeah it’s pretty good thanks xx
Slept 23 hrs a day as a baby.
Thank you so much for watching xx