Anyone have this? It’s really distressing.
I’m wondering if anyone else has experienced something similar, especially at night or around sleep.
I’ve been having episodes involving a strong “activation” feeling in my body along with rigidity, heat, sweating, intense foot activation, and involuntary foot movement. It tends to happen at night rather than during the day. The episodes are distressing and physically uncomfortable, and I’m trying to understand whether this sounds familiar to anyone else.
I’m not looking for a diagnosis or extreme speculation — I’m more interested in hearing whether other people have experienced a similar pattern, especially involving:
- nighttime onset
- rigidity/tension
- sweating or heat surges
- involuntary foot movement or foot activation
- symptoms clustering around sleep or late evening
I’m also curious whether anyone noticed a relationship between symptoms and medication timing, sleep transitions, stress, exhaustion, or medication half-life effects.
Again, not looking for definitive answers from strangers — just wondering whether this pattern resonates with anyone else.
Hi,
!
Apologies for not seeing your post earlier! I will say that there is anecdotal evidence that many people experience a worsening of symptoms in the evening/night. I don't know why this is, but I bet many of us have experienced fevers that seem to spike in the night or flu symptoms that seem to get stronger in the evening.
And, while I can't speak to your specific situation, I know that I have experienced symptoms being stronger when I am tired or stressed or even when we have a time change in my part of the country. And it makes sense that, depending on your condition, your meds may be waning in efficacy as the day wears on or the time stretches between one dose and your next. While this article doesn't focus on nighttime symptoms, it does discuss managing fluctuating symptoms and you might find it worth the read -- https://raredisease.net/living/fluctuating-symptoms.
I don't know if you have been officially diagnosed with anything, but if you haven't, I would definitely talk to your doctor about the symptoms you are experiencing. And if you do have a diagnosis and feel like your meds or your meds schedule isn't working anymore, please let your doctor know. You deserve to get your symptoms as under control as possible.
Best, Erin, Team Member.
