HA is back - down the rabbit hole again

[maryjane91]

So a few years ago, I had debilitating health anxiety and I'd convinced myself that I was dying from ***, a brain tumor, various other cancers and other rare diseases... So far, none of it turner out to be the case.

I did (and do) experience many symptoms, but have since been diagnosed with a severe case of hypermobility spectrum disorder (suspected EDS) and I have ADHD as well and those two explain many of my symptoms and during the last couple of years I've really had my health anxiety under control.

However... the thing that scares the shit out of me more than anything else is the dreaded 3-letter disease we all seem to fear so much... and now, after years of being blessfully free from this fear, I've fallen right back down the rabbit hole and I am so ****ing terrified - and So disappointed, too, that HA is once again rearing its ugly head too, since I was doing so well.


This time, the fear seems all too real. Since 2022 I have had low creatinine (and urea) levels (not very, but below the normal range). I didn"t worry too much about that, since I have been under-eating due to stress (not HA-related) and I stopped working out. I am also vegan, but I have been vegan since 2008 and my creatinine levels were always normal until 2022, so I don't think that is the cause. All other tests are completely normal.

But then! Of course... the fasciculations began. About a month ago. I am trying so hard to keep calm until my neurologist appointment in August, but I am struggling. The fasciculations happen a bit all over the place, but it is mainly in my right arm and hand and it is freaking me out - plus it sometimes happens when I am using my arm/hand, not only when at rest. The fact that it goes basically from shoulder to hand on my right side (not all at once, but typically all over in one day) and also happens when not at rest (though mainly at rest) freaks me out. It seems most stress- or exercise--induced twitching mainly happens in face and legs and only at rest. And the low creatinine levels are just making everything worse.

Has anyone else had twitching hotspots in hand and arm on one side, just from stress/anxiety or BFS? And maybe even low creatinine levels too???

I am female and 32.

Any help or words of reassurance will be appreciated.

[maryjane91]

Oh and I also sometimes get single twitches in my feet or calves when standing/walking. Can still walk on toes and heels, balance on one leg, do the sitting to standing thing etc. But still worries me. My hand also just twitched while I was writing this (the hand I am using to type).

[maryjane91]

Hi again...

So I had my neurologist appointment in August, clinical evaluation was normal. Fear went away for some months and twitching decreased.

Now it's back. And again, just hands, arms and shoulders. Face as well. So only above the waist. Seems like everyone else mainly twitches in legs and feet, which has happened to me, but is very rare.
I am completely spiralling, I wish I could just start twitching somewhere else (or preferably stop twitching altogether). Going to see my doctor today for my anxiety.

Has anyone else experienced similar? I al so ****ing terrified. Especially now I'm over 30 as well.

[Carnation]

Hi maryjane, when my anxiety was at its worst I was experiencing twitches all over my body.....
Face, arms, stomach, eyes, legs, feet.
When I calmed down so did the twitching.

[maryjane91]

Thank you so much for your reply - I think I would actually feel better though if it was everywhere, more widespread rather than confined to my upper body. I do have myoclonic jerks all over though.

Saw my doctor today, she did a neurological exam as well and was not concerned in the slightest she said... and yet I still can't quite relax. Stupid HA.

[nomorepanic]

Maybe treating the HA is the answer here and not searching for answers that are always life threatening.

Have you looked into any help for the HA?

[maryjane91]

Well I did go to therapy for HA years ago and have been doing relatively well for the past couple of years, it's only recently that it's resurfaced... but I am seeing my doctor again next week to talk about my mental health

[maryjane91]

So I was trying to distract myself these last couple of days and I was starting to feel a bit better, despite still twitching, but now I have been twitching in front of my shoulder, right under the collarbone. For an hour, not even a minute in between. Most I can feel, but some I can only see. I am spiralling. This is both localized and nonstop. Usually my twitching in a particular don't last more than a minute or two if even that.

Has anyone experienced anything like this suddenly? It's still twitching away. I am freaking out.