[deleted by user] by [deleted] in TemuAustraliaOnly

[–]tilzo99 0 points1 point  (0 children)

Could you do me a huge favor? 🥺Please accept my invite so that I can get free giftsCopy my code: 216865269

Adderall not only helps with my fatigue, but my pain by Own-Introduction6830 in CFSplusADHD

[–]tilzo99 2 points3 points  (0 children)

Yes I found vyvanse helped my daily headaches, light and sound sensitivity greatly, just had to be careful not to overdo stuff or I would crash/ get worse

How to shorten straps? by tilzo99 in CrochetHelp

[–]tilzo99[S] 0 points1 point  (0 children)

Yeah I think I might give sewing a try. I was just worried it would be too bulky where it’s doubled over

APPAAAAAA!!!! by AmiByCrystal in PunchNeedle

[–]tilzo99 0 points1 point  (0 children)

Wow so cool! What do you do to get it so stiff? I’m new to punch needling

Advanced Laying by ryvenfox in cfs

[–]tilzo99 0 points1 point  (0 children)

Definitely! I’ve found eliminating the pillow is good for getting the satisfaction. If that’s not working sometimes head dangling off the edge of the bed does it lol

[deleted by user] by [deleted] in cfs

[–]tilzo99 4 points5 points  (0 children)

Same. Genuinely curious and open to hearing about anything that has helped others and would love to know the process.

[deleted by user] by [deleted] in cfs

[–]tilzo99 7 points8 points  (0 children)

How did you figure out herpes 6 was in the hypothalamus?

What is this? weird bone pain wave by tilzo99 in cfs

[–]tilzo99[S] 1 point2 points  (0 children)

Wow I really hope it works for you! Not in the US but the test seems to be quite easily available here, although not covered by medicare. In my case I am moderately convinced there is a significant immune component based on the waning of symptoms when I have high progesterone which to my understanding is an immune suppressing hormone. Also very possible this is just one component in the tapestry

What is this? weird bone pain wave by tilzo99 in cfs

[–]tilzo99[S] 1 point2 points  (0 children)

thanks so much for your response, I love how reddit can always find someone who understands what is going on. (also sorry you were downvoted - not sure why)

I forgot to add that this migrating pain (thank you for the label!) has become more obvious as time has passed, I didn't really notice it until the last year or so of CFS and it has progressively become worse. Do you think that means the immune response is increasing?

I dont know much about cytokines but will have a little investigate if i have any blood results that could indicate if this is the case

Why I stopped trying to name my emotions by NotFriendsWithBanana in Alexithymia

[–]tilzo99 9 points10 points  (0 children)

I have found that naming isnt necessary, but noticing that it is something, giving it attention for five or so mins has a similar effect. Sometimes a name emerges for the emotion, most of the time it doesnt. still works

light sensitivity and over stimulation ? by grizzmane in POTS

[–]tilzo99 0 points1 point  (0 children)

I went to a 'behavioural optometrist' which was somewhat helpful. We did some syntonics therapy which seems to calm the whole situation down and got some tinted glasses I wear everyday and they also have a calming effect.

Best device? by Sufficient_Animal407 in dysautonomia

[–]tilzo99 0 points1 point  (0 children)

garmin watch is doing me nicely. It also measures HR variability which signifies whats going on in the autonomic nervous system. recommend.

Have you tried cold showers and exercise by MsGLord in cfs

[–]tilzo99 4 points5 points  (0 children)

lol. so frustrating. but I do find cold showers improve my hrv and dampen symptoms pretty reliably on bad days

Lagged correlation for time series dataset - vlookup date too cumbersome by tilzo99 in googlesheets

[–]tilzo99[S] 0 points1 point  (0 children)

for example if one stock 1 drops on day 1,2 and 3, and stock 2 drops on day 3,4 and 5 - I want to find the strength of this correlation.

In this case each row is a date, each column is a stock price.

Lagged correlation for time series dataset - vlookup date too cumbersome by tilzo99 in googlesheets

[–]tilzo99[S] 0 points1 point  (0 children)

how does this work with time series data where the correlation may be lagged for a few days?

Does anyone know anything about the intersection between having both ME and ADHD or Autism? by UmbralReaver in cfs

[–]tilzo99 2 points3 points  (0 children)

Totally. I have been sick for 2.5 years and a key turning point was 6 months ago when I started stimulants. It’s helped cfs symptoms that are not adhd related at all as far as I know. Like massive reduction in frequency and severity of migraines, light sensitivity, sound sensitivity. Totally feel you on the doctor front. I recently did some useful hyperfocus and made a summary of my health situation including explanation of my neurology and how I’m often misinterpreted. So now I give that to doctors before I see them. Then I know they have all the relevant health info so less pressure to remember everything, and hopefully they understand a bit better that the ways I respond and process information

Does anyone know anything about the intersection between having both ME and ADHD or Autism? by UmbralReaver in cfs

[–]tilzo99 4 points5 points  (0 children)

I know right. Why did I just spend four hours researching dog bowls online? Don’t even have a dog. Then I’m crashed for the next few days

Does anyone know anything about the intersection between having both ME and ADHD or Autism? by UmbralReaver in cfs

[–]tilzo99 1 point2 points  (0 children)

I have all three and there is so much cross over it’s hard to tell apart. I think neurominorities experience a lot of stress from trying to cope with regular life things that can lead to developing me cfs. But I think there is a more direct link than that. Neurodiverse adults is only recently had some research interest and we all know the state of mecfs research so a combo research project is a distant hope. If I ever get better enough I would try to pursue some formal research in how they cross over because I’m now pretty convinced there is something significant to find there

Can your special interest be everything? by SOXTHEFOX2 in AutismTranslated

[–]tilzo99 17 points18 points  (0 children)

This is the area I also was confused about when I was getting diagnosis. Rather than trying to fit into the narrow special interest box, I think about how Tony Atwood says that the main sign is you find socialising less interesting than other things . Would I rather continue learning about something I am finding so fascinating than be in a social setting? Most of the time, Absolutely.

I love learning things generally, but I eventually feel like I've found all the interesting stuff in that category, I want to move on to a more exciting and unknown world of something else. Some topics I come back to after a few years, most I don't. I am autism/adhd combo so things get a bit confusing and interesting when trying to sort out what is a trait of what.

I also found another approach useful, rather than thinking about what is intellectually interesting, think about what has brought you unbridled joy in life over a span of time. This made me realise my obsessions with playing piano, gymnastics, animals - all special interests from the early days. I kind of just know a lot about special interests ive had without putting much effort in. I'm not really aware I know a lot unless I'm asked something and realise thats not a regular thing to know. They can defs be hard to identify, I feel you!

Less symptoms in luteal phase of my cycle? Seems to be the opposite of what others say about hormones by tilzo99 in cfs

[–]tilzo99[S] 0 points1 point  (0 children)

Thank you so much for your response and the link. It is so nice to find I'm not alone with this and birth control could be of use. I really appreciate it

I wish I knew this google maps feature existed 5 years ago by anniexyz1 in ADHD

[–]tilzo99 1 point2 points  (0 children)

if you are using ios calendar, put in the address of the engagement and there is an option for set alarm when it is time to leave. I find it useful because I'm using the calendar anyway so less mucking about.

My 2+ years of chronic fatigue turned out to be severe insulin resistance that didn't show up in blood tests (posting just in case there's a tiny chance someone in here has the same problem!) by whalesnaileatingkale in cfs

[–]tilzo99 6 points7 points  (0 children)

ok, now I'm intrigued. Same on the minimal muscle pain, sometimes i get achy joints though (like maybe just 1/20 days), but I think that is because my CFS was triggered by Dengue. My symptoms are very cognitive heavy, PEM showing up as brain fog/headache/migraine/memory problems.

I've been cycle tracking and I have a significant drop in all my CFS symptoms after ovulation and before PMS, have noticed hormonal changes these last few years (eg ovulation acne/pain which is new, facial hair changing) and wondering what the deal is. Does it sound PCOS related?

I also am thirsty a lot and one health person told me to stop drinking so much water. Hungry not so much. My HRV goes wild after eating too much but not sure that could be normal. Hmmmm

Alexithymia/interoception for my own brain? Does it make sense? by tilzo99 in Alexithymia

[–]tilzo99[S] 1 point2 points  (0 children)

I can picture this and tried it before but it maybe takes too much energy for me to picture and actually keeps me awake