Endo and internal shakes?

[Katie313]

Hi everyone I would just like to ask please if anyone has endometriosis and has internal shakes?

I feel like this every day for few weeks and i have endo stage 4 for many years but the shakes are new to me.

I found research that says that women who have endo and had covid can have internal shakes for many years it can even develop to bigger problem which I am of course afraid of. In that research it says that fibroids and internal shakes where your body shakes but mentally you are not in stress is more common to fibroids than endo so I now even question if my gynecologist is right about me having endo what if i have fibroids instead?

Does anyone here have the same problem and if yes how do you deal with it?

Thank you everyone for your answers.

[Kelpiestryder]

hey! I don’t have ‘endo’ diagnosis yet, have only just started that journey but I do have the internal shakes or ‘tremors’ as I’ve come to know them as!

I went to my doctor over 3 years ago complains of all sorts of weird symptoms and I suggest my hormones are out of whack or maybe something not right with how bad my period/pms are etc basically got shrugged off and told it was anxiety and chronic fatigue syndrome and possible functional neurological disorder (all of which im certain I have because of underlying endo) so I went down a pointless but very informative rabbit hole for 18months self learning about the central nervous system, trauma, inflammation in the body etc which is where I’m gonna weigh in here about the ‘tremors’…

It’s essentially your body’s response to stress..not just stress in the way we interpret it like yknow day stuff but also internal stress like blocked emotion, trauma and inflammation/disease…seeing as endo is an inflammatory disease it affects the central nervous system which is what controls your immune response, flight/fight response, adrenals, cortisol etc etc it’s not just oh you’ve got some endo how painful, it can literally change the way your basic body functions on a ‘primal’ level!! I could literally talk about this until the cows come home I’ve found it fascinating, so feel free to pm if you like!

But yes to tremors. I used to get them at night, sometimes before going to bed also, but mostly in the mornings just before waking up…it’s as if my whole body is vibrating or shaking but I’m not physically moving and sometimes I’ve not even opened my eyes! I also use to get ‘non epileptic seizures’ which were terrifying! Both have subsided due to a multiple of factors but I used to get them every week now I get them rarely and only when I’ve ’over Done it’ or what I believe is an endo flare up…infact I hadn’t had tremors this year until this past week when I had a savage ovulation pain flare up!

Things to look into (or I can help if your not much into science/biology things);

Cortisol and adrenal fatigue..without getting tested once I learnt about it I could tell mine was out of whack and once I started addressing that the tremors reduced!

Diet. On a really boring gf, dairy free, sugar free, low carb high protein diets! So dissatisfying but effective, as soon as I waver symptoms increase!

Rest. Rest. And more rest. Like way more rest than you think. I found even lying down and scrolling on my phone was too much for my body after decades of built up ‘stress’. Scrolling is a dopamine fiend which in turn affects other hormones and pulls everything out of whack. I had to result to lying down in a dark room, face mask on, ear plugs in and a weighted duvet to calm my system and then built back up to ‘normal’ relaxing activity from there… again hadn’t done that for at least a couple months until this past week of a bad ‘flare up’.

Emotional stress/trauma/life stress and the dreaded buzzword that I hate that I’m about to use but ‘mindfulness’. Yoga nidras a good go to, it’s boring but somehow it works. The mind is magic!

There’s so much more to it and unfortunately you have to self learn or pay for private help because the nhs is pants but if your worries exaggerate your symptoms and push for an mri or neurologist! I got one and it’s all clear so I know it’s not a problem with my brain and likely my bodies response to inflammation and stress!

I hope that helps! They are utterly terrifying, but they do pass and they can go away, fretting about them only stresses the system more and makes them worse! Easier said than done I know!

🖤💚

[Lilac_10]

Hi Katie,

Do you mean feeling like you’re shaking on the inside but you’re not visibly shaking? I’m not sure if that’s what you mean but when I’m on my period and in severe pain during the first couple of days, I often feel incredibly shaky, weak and faint. It feels like I’m shaking where I feel faint, but on the outside visibly to someone else I’m not. I’m not sure if that’s the sort of thing you mean?

[Katie313 in reply to Lilac_10]

Hi Lilac thank you for your reply I am genuely shaking sometimes that its even visible and i didnt mean through period I think Kelpie above described it great that it is tremors. But i do have it through period as well but i didnt mean that one, that one through period i think has any girl with endo. Wish we wouldnt suffer all so much... Thank you for your comment ☺️

[BlueElephant_25]

I have POTs as well as Endometriosis, before I knew what it was and how to manage it I had terrible internal tremors as well as often shaking visibly too. It would be worth tracking your heart rate and keep an eye on it. Elevating my bed helped also. I drink 3L of electrolytes each day, this made the most difference. It still flares but much more manageable.

[Katie313]

Wow thank you for your reply didnt know electrolytes makes such a difference? I will need to try that out. Do you have some specific brand you recommend? Thank you so much