Recent RLS recognition
Recently my psychiatrist suggested I look into RLS management as she believes that I meet the diagnostic criteria. This was not the first time it's been suggested but the first time I've made an effort to look into it at the age of 32. No one really bothered to explain to me what the true symptom spectrum meant. So once I looked into it, I realised that symptoms I had attributed to my ADHD and anxiety were actually RSL symptoms!
I'm looking into compression garments. Wondering if other folks have found them useful?
On good days I don't notice my symptoms because I've lived with them my entire life. On bad days, which I'm currently having, I have symptoms on both my legs worst at my knees, some on my hips and also in my elbows.
I've previously used marijuana at night which I've found successfully allowed me to settle for a deeper sleep but with my ADHD meds I'm not allowed to take them both. I've found benzos useful but don't think it's a good long term solution due to the addictive and highly regulated nature of the medication.
I walk my dogs every day and go on runs when possible (2-4 x week). I try to cut out alcohol, specially if I'm having a bed symptom day/week because it increases my symptoms. I've vegan and only have tea/coffee in the morning.
For work I'm a mental health professional so have some stress that can't be avoided due to the nature of the work but try and keep a good work life balance.
I'm open to any suggestions of what I can do to decrease symptoms. I'll be talking to my psychiatrist about gabapentin for sleep time. I've been prescribed clonidine for sleep but have found it more useful for managing the increase heart rate the ADHD stimulant meds give me. I've seen some academic evidence to suggest that clonidine can increase RLS, but haven't been able to recognise a pattern for myself yet.
Very interested to hear what other's have found useful, specially if you also have diagnoses of ADHD and autism 😀
For me its definitely sugar that triggers it. I walk and cycle 20 to 30 miles each week, and i eat healthy during the week but allow some treats/fast food at weekends. The exercise seemed to make no difference and i used to smoke mellow leaf mary jane but apart from tuning me into david icke it made no difference (unless i got the munchies and hit the sugary sweets). Cutting out the junk food and soda including diet made it go away. Now i can resist those things and i don't toke anymore. Sugar brings it on so i am no longer tempted. Nuts help with the urge to snack when not fasting or fruit which i call natures sweets. Hope that is of some help.
I think it's awesome that you've been able to rarely stop the urges with a lot of focus, Mark. It makes sense to me, though I can only imagine the effort it takes. Maybe cutting out sweets and MJ have helped you cultivate some powerful self-discipline! p.s. Do you like dates? They are SUPER sweet but I'm curious if you've had a positive or negative response from those more natural sugars. -Melissa, team member
funny enough i looked at a pack of them last week but was not sure if i should try them. Well, that tells me i should. I will give them a go. Cheers.
Welcome!! 😀 I'm so glad you decided to investigate your symptoms and found us. RLS can be incredibly tricky to manage, and relying on the experience of others can be a game changer.
That said, I have come to believe that everyone has their own "toolkit" of things that help and things that make their symptoms worse. It might help you to keep a journal for a while to see if patterns emerge. You can look at both your daytime activities, like diet, stress and activity, and nighttime routines and treatments.
Our community has tried so many different approaches ... heat, magnesium, vibration, prescription meds, meditation, exercise at various times and intensity, sexual activity, even soap in the bed (we believe that anything is worth a try!).
You may want to get your iron levels checked, as deficiency can be a hidden issue for some people, especially if you're on a vegan diet.
We are here to support you and wish you all the best! -Melissa, team memberThank Melissa! I had started keeping a symptom log to try and keep track of what works to elevate and increase symptoms. It's awesome to get that encouragement <3
I've found alcohol is a trigger, but I have found it hard to cut it out. I guess balance is key.
But also, found that sitting on my fleece electric blanket during the day when I'm trying to do some passive resting incredibly useful 😀 Otherwise I'm constantly overstimulating myself in efforts to ignore my RLS symptoms, which often leads to emotional dysregulation and exhaustion, which affects my ability to connect with othersThat's a lot to deal with. Not enough people talk about RLS anyway, but there's so much to it beyond just the sensations. The emotional and psychological toll can be just as hard to navigate. Don't be afraid to seek out a counselor or other ways to self-soothe and regulate.
I hear you about cutting out alcohol. It's hard to do when it's a regular part of your life. Keep experimenting ... hopefully you'll find that you can still enjoy a drink sometimes. If not, there's no better time to be sober -- lots of people are going that route now and there are so many great mocktails and zero proof drinks.
The fleece blanket sounds dreamy! Heat can be a help for some, but for others it's a big trigger. Nice to know you can enjoy it. Here's an article that talks more about temperature as therapy:
https://restlesslegssyndrome.sleep-disorders.net/living/relaxing-bath
Happy that you're here. 😀 Keep doing the best you can! -Melissa, team member
CommunityMember4cc66b: So sorry you have so much going on. I am fairly new to this forum and have also appreciated it very much. I will look forward to hearing about your progress. - Lonped
Thank you so much for your kind and thoughtful response <3
Finding this forum really helped me take more active steps towards finding ways to manage my symptoms.
I will also be very interested to see the overlap of ADHD, ASD and RLS, all being neurological conditions that we still don't have a lot of causal information about.
I will definitely keep ya'll updated on how my treatment plan progresses 😀
Fortunately for me, I live in Australia, where we have Medicare which covers part of my medical costs and subsidizes approved medications. My heart goes out to does who are unable to access medical care due to financial barriers to entry xx
