Anyone else experiencing RLS symptoms from loud noise or a chaotically noisy environment?
I'm curious if anyone else experiences this and how you're managing.
So starting in October 2023, I've been having this weird problem where loud and/or chaotically noisy environments make my RLS symptoms worse. I get some other strange symptoms with this as well. I have a harder time understanding what people are saying even if it's not that loud around me, just chaotically noisy. My limbs also start to feel heavy and uncoordinated, and it's like I need extra conscious effort to coordinate them. None of the doctors I've spoken to have heard of this. I found a case study of a patient who had RLS and these symptoms (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4881884/), but nothing else.
I'm 37F and have had RLS since early childhood, which was maybe triggered or worsened by a head injury when I was 5. Symptoms progressed then plateaud as a teenager. Then chemo (2013), lyme disease (2016), and multiple covid-19 infections worsened symptoms further. I also have Persistent Genital Arousal Disorder/Restless Genital Syndrome that started during childhood and RLS symptoms in both arms and the left side of my face and neck.
I'm currently taking pramipexole and iron tablets, which has helped these weird symptoms immensely. I've tried gabapentin, which was prescribed for chemo-induced neuropathy, but it made me feel drunk and suicidal with little symptom relief. I also hate the way benzodiazapenes make me feel. And opioids make me itch too much to sleep, and the solution I've been told for that, benedryl, makes RLS symptoms worse.
I'm nervous about augmentation on pramipexole, but I feel like I don't have many other options that won't cause adverse side effects. I'm seeing a neurologist in September. Not really hopeful about getting answers about why this is happening to me or an offer of some miracle treatment. I just want to be believed and have this documented as a physiological thing that's happening, not psychiatric because I was almost diagnosed with functional neurological disorder for this.
Anyone else out there experiencing this?
Hi
. How difficult and frustrating to experience symptoms like that with no explanation. I hope the neurologist is able to help. Have you ever had an MRI of your brain, especially since having Lyme disease? Later stages of Lyme disease can result in lesions in the brain that might explain some of your symptoms. Balance and muscle symptoms are also not unheard of in relation to sleep disorders. People with type 1 narcolepsy experience cataplexy, which a temporary loss of muscle control. Here is an article that might interest you: https://narcolepsy.sleep-disorders.net/symptoms/cataplexy. There is so much we don't know about the brain and the central nervous system. The slightest disconnect can cause major issues yet, sometimes, seemingly simple therapies or medications can resolve the worst of problems. We just don't know. I hope you continue to push for answers and advocate for yourself until you get the answers and the treatment you need and deserve. I wish I had better answers, but I hope you get some responses from others in the community. Gentle hugs. - Lori (Team Member) Thank you for the kind reply! I've had MRIs that fortunately show no lesions, though unfortunately that leaves me with more unanswered questions. I don't believe I have narcolepsy or cataplexy based on my symptoms. Since iron and pramipexole have significantly helped symptoms, I think this has something to do with the mechanisms behind RLS. There are indeed a lot of unknowns about the CNS. I've been thinking about going back to school to learn about the brain and get into research with the experiences I've had with RLS as a guide. But that's pretty pie-in-the-sky thinking while I'm in the thick of this! It would be wonderful to have someone who has experienced RLS working in the field. I hope you do reach for that pie in the sky someday. - Lori (Team Member)
