u/Unlikely_Molasses_77

To be clear, I am not diagnosed yet, but I am fairly certain I have mecfs. I has some minor symptoms in HS that went unnoticed and were easily ignored, and then in 2020 I got mono, and its been a steady decline since. I have been slowly ruling out other possible causes for my symptoms (this week I'll be seeing a GI specialist and having an mslt. I do not have a thyroid issue, and tested negative for immune diseases) and taken measures to address POTs and vitamin deficiencies with no change, in fact I'm getting worse. I can say pretty confidently that I experience PEM and the crashes have been getting worse and lasting longer.

To be abundantly clear, not working is NOT an option. I do not need to hear the "hard truth" of it. I have heard it all and I understand the risk. Many simply do not have the option to stop working and they deserve to hear actual achievable advice for their circumstances. The best case scenario is that in another year I may be able to drop down to 30hrs, and *possibly* in 3-5 years be supported financially by my partner (I am not banking on that because I have no wish to push that responsibility on him unless that is what he wants)

With that out of the way..

Now that there is a lot more talk and visibility online, I've seen a lot of people mention light sensitivity and how it can be extremely triggering, especially in severe cases. Personally I'd say I'm probably mild starting to lean into moderate, and as such I haven't noticed light sensitivity. However my workplace has very bright fluorescents, and I heavily use computers at work and home. I was considering buying some fl-41 glasses as a preventive measure because I'm curious if light could be putting stress on my system without me realizing. I couldn't find any mention of anyone trying this without having already noticeable sensitivity. Has anyone else considered this preventable measure? Has anyone tried it and noticed a difference? The best price for quality I've found is about $80 so although it wont break the bank, I wonder if its worth it just to try.

I've also seen low dose naltrexone mentioned recently as a newer treatment option, and as I'll be seeing a specialist soon to see about an official diagnosis, I was planning on asking about it. Is anyone currently taking it, and have you noticed symptom improvement?

Im also curious about any small or even maybe fringe measures people have tried for symptom management. For instance theres a lot of studies coming out about psilocybin and its positive neurological effects, has anyone tried microdosing? Are there any suppliments or natural remedies that have made your day just a little easier when it comes to fatigue and brain fog, like creatine, saffron, lions mane? *I understand there is not evidence for things like these and I am not suggesting any could be cures or life changing* I am simply asking if in anyones personal experience, they have noticed a positive change with anything outside the box. I think we are all aware that research is lacking, and I personally don't think theres any harm in exploring even the smallest idea if it helps get through the day.

Tldr: outside of "stop working", what small measures have improved daily function? Things I'd like to hear about specifically are fl-41 glasses, low dose naltrexone, psilocybin, and supplements like creatine, saffron, lions mane, ext.

Does anyone have a recommendation for a mat of some type to do exercises at home? I'm not sure yoga mats are thick enough, cause I need to being doing things like bird dogs and planking and such, and the issue is having elbows and knees against the hard floor. Also something around $30. I tried looking up thicker yoga mats from brands people recommended elsewhere and they were all over $100?? Its a mat for crying out loud😭

Also any other equipment recs? I already have some exersize bands, does anyone regularly use weights at home and find they help?

I've had chronic joint pain for years but often get waved off due to being "young to experience these issues". I am hypermobile but according to the ortho and rheumatologist I saw already, not mobile "enough" to have HEDS. I'm not saying they're wrong, but they tend to be dismissive after that. I do not have a rheumatoid factor and I dont have swelling so the rheumatologist told me he wasnt sure what I was looking for, without offering to look into the myriad of possibilities like osteoarthritis or fibromyalgia. I dont believe an ortho is the right doctor because based on my symptoms I believe the pain stems more from connective tissue issues than the bones themselves. I just need a doctor who is knowledgeable, actually looks for deeper and less common issues, and won't dismiss me for being "to young to experience chronic pain"

Tldr: looking for a rheumatologist that is knowledgeable about more than the basics and takes younger patients seriously

EDIT: I literally JUST found out my pcp has suddenly moved out of network (I literally was speaking to her about referrals like a week ago so I've definitely been blindsided) so major MAJOR plus if its a clinic that doesnt require referrals. Goldstein and Erhardt both require them even though my insurance does not

My Birthday is coming up and I'm thinking of doing a nice fancy dinner with just me and my bf. Im in the Northglenn area so anywhere in that area or better the Denver area would be great, as I plan on going to the botanical gardens in Denver as well.

Im looking for:

-50-60$ per person preferably (Im not rich😭)

-Fancy dress (not like a required dress code, but a place that people tend to dress nice)

-Decent portions, nice appetizers, good drinks (the Itty bitty tiny 10 course club just isnt my thing)

-Dim, warm, classy. Im not a fan of the modern industrial look, Id rather have more of a vintage/ historic building type vibe if that makes sense.(I really like the vibe of the Dushanbee teahouse in boulder)

I'm not too picky but my favorites are Mediterranean, Italian, or Mexican!​​

Thank you!

My boyfriend and I have been really getting into loose leaf tea and I'd really like to get a tea pot. It seems like most recommendations are based on what kind of tea you like, but we try a wide variety. We order lots of samples from Adagio. Green, black, white, herbal, rooibos, oolong, all different types, all different regions. My boyfriends favorite is the Double Ginger, My favorite so far is probably the Jasmine Pheonix Pearls. I also want to find a really good English breakfast for mornings but Adagios didnt hit the spot for me.

Anyway, what is a good all around teapot thats versatile enough for all kinds of loose leaf? Im looking for

1. A reputable brand. I have some health issues so I'd like to avoid things like Teflon or possible lead content

2. Preferably one that is sized for 2 people/servings since my bf and I like to sample new ones together, and when drinking seperate we both like large portions of tea

3. Fine filter. With bigger leaves like the pearls its not an issue, but for smaller leaf I hate the texture of having tiny tea sediment in my cup

4. Preferably I think a removable filter for ease of cleaning, as well as not needing it for teas like pearls or blooming teas.

5. I'd like to stay under $100, under $70 would be better

Other notes not quite as important!>

I like the idea of a glass one for things like pearls because I love seeing them unfurl, but I've seen complaints of them being easy to break, if anyone has experience with those I'd love to hear!

I'd love something that looks classic/elegant. Not a huge fan of the super modern looking ones.

Bonus if someone can also suggest possibly a tray to go with it, and a place to buy tea pets! I love the aesthetic of having a whole tea setup!

Obviously I doubt theres any one pot that fits all bullet points, and I'm also very new to this, so any recommendations you think work or would be even better than what I have in mind is appreciated!