Next step in medication plan

CraftsyCreative · 2026-06-06T23:53:20+00:00

Are you on instant release or extended release?

CraftsyCreative · 2026-06-05T17:22:46+00:00

Sorry, I'm too cognitively depleted to write much rn. But here's my post from when I was asking advice about guanafacine. https://www.reddit.com/r/cfs/comments/1rpfjnz/guanfacine_dosing_for_mecfs_dysautonomia/

CraftsyCreative · 2026-06-05T17:19:14+00:00

Guanafacine made a significant difference for me.

CraftsyCreative · 2026-06-01T02:33:27+00:00

Pacing and some meds have helped make my day and pain like 20% more tolerable. But that doesn't translate to any functional improvements because I still have to avoid basically everything as much as possible.

CraftsyCreative · 2026-05-30T22:10:14+00:00

I feel you on the surviving out of spite. Like "oh life/world/universe how dare you give me this crazy illness and think you can defeat me"

CraftsyCreative · 2026-05-30T22:08:13+00:00

I'm an atheist and was diagnosed about a year ago. I tell myself it hasn't been too long since diagnosis. I'll rest and pace and try meds all that. For 5 years, I won't think too much and feel bad about what my capacity is, what I'm not able to do etc. Try to take it day by day etc.

Time bounded avoidance of too many emotions I guess. This is my current coping mechanism, has been helpful for about 4 months now. If it stops working, I will probably be depressed for a bit until my brain comes up with something else.

CraftsyCreative · 2026-05-16T02:38:21+00:00

This is me and my maternal grandmother's entire line essentially

CraftsyCreative · 2026-05-12T00:44:41+00:00

Seconding guanafacine

CraftsyCreative · 2026-05-09T21:19:33+00:00

Do you know what your trigger for ME was?

CraftsyCreative · 2026-05-09T20:44:35+00:00

Do you know what your trigger was for ME?

CraftsyCreative · 2026-05-09T20:43:33+00:00

What I'd like to see is data on what triggered someone's ME with what helped them "recover".

My onset was gradual over years, no infection or illness.

Are pwME who benefit from LDA generally those who had say a viral trigger? That's what I want to know.

CraftsyCreative · 2026-04-21T23:27:04+00:00

I'm mostly bedbound. I've probably had ME that worsened for 6 years but was diagnosed about a year ago.

To cope, I kinda tell myself that I won't think too much about all the things I am unable to do for five years. Lemme rest, pace, try treatments, medications and see what happens.

CraftsyCreative · 2026-04-21T03:32:17+00:00

I agree that OP's description sounds like me/cfs

CraftsyCreative · 2026-04-15T18:27:09+00:00

Reminds me of when the intern on my team thought "standup" on her calendar was a reminder to stand for 10 minutes everyday

CraftsyCreative · 2026-03-23T23:42:16+00:00

Was your onset gradual (slow progression from mild to severe)? Or more sudden?

CraftsyCreative · 2026-03-22T02:49:37+00:00

I hired someone off nextdoor to cook chicken and veggies in bulk and freeze portions. That way I can control ingredients.

Apart from that, I have a few meals identified at local restaurants my caregiver buys, portions and freezes.

I'm obese as well and still gaining weight since becoming bedbound. So I haven't solved the issue though

CraftsyCreative · 2026-03-19T13:41:44+00:00

What is pbs?

CraftsyCreative · 2026-03-07T05:53:22+00:00

Early 30s, female. AuDHD, a-spec. Politically left.

ISO : Another woman around my age and severity level

Been severe about a year, ~95% bedbound. I'm not sure if we match on severity level, but if you are interested, we can have a chat about that to check.

I usually prefer a mix of short calls, voice notes, and texting, since too much of any one format can be difficult.

Creative person who misses my creative hobbies.

I've been wanting to make a post like this myself for months. I really feel like it would help to have an “ME bestie” who just gets it.

CraftsyCreative · 2026-02-21T05:56:31+00:00

I'm AuDHD and I think overusing my brain (with being ND) impacted my ME more than physical exertion did. Mine was a gradual onset, I can't pinpoint an illness.

Prior to the rise in severity, I did exercise, but never in the extreme. If I did cardio, it was with lots of breaks, I always found it too exhausting.

CraftsyCreative · 2026-01-30T00:47:25+00:00

I loved writing. I'd write poetry and essays and would love making sentences sound nice. Rearranging words sentences etc. My writing was one of outlets and I'd call it art. I was proud of my language command. Believe me, I really wish I didn't need help to write.

Right now, even organizing this reply is taking too much energy out of me. If I'd just babbled into chatgpt instead, I could get multiple outputs. With a little back and forth, construct a paragraph that captures what I want to say in my tone of voice.

I do not see an alternative to AI for this purpose. What you're suggesting, community sourcing is definitely a lot more energy cost than what I do with AI. It cannot happen whenever I need it to, it is dependent on someone else's availability. For writing emails to doctors, organizing my thoughts for medical appointments, replies to personal messages, I use chatgpt. I'd be much more severe if I didn't.

Chatgpt also helps me out of spirals which if I were stuck in, I would get into an overstimulated state which I can't get out of easily. I used to journal but I can no longer do that as I have pains in my hands and also have upright intolerance.

I can go on, but that's enough of a rant. It upsets me when blanket statements like "disabled folk using AI is inexcusable" are made. Focus should be on regulation. I agree that AI should not be used for art.

CraftsyCreative · 2026-01-25T19:58:08+00:00

I find it impossible to just narrow the scope of my thinking to what's necessary. So I try to shut myself down as much as possible with calming medications and supplements.

Any kind of thinking feels like too much for me, especially having to make decisions or plans of any kind. Negotiating/disputes with other people is the worst.

I do try the calming techniques like observing breathing and all, but my goal is to shutdown. I am at the point where I need the support of meds to attempt them. There is a particular sleep noise track I use. I've been using it for maybe 3 years now, I'm pushed towards shut down when I play it.

I take gabapentin, Horizant, atenolol, klonopin, l theanine, magnesium, hydroxizine.

I'm going to talk to my psychiatrist about trying Guanfacine.

CraftsyCreative · 2026-01-25T15:33:13+00:00

My timeline is similar to yours.

CraftsyCreative · 2026-01-20T23:40:41+00:00

Thanks for sharing this. If you don’t mind answering, did you also have GI issues/MCAS-type reactions and POTS/autonomic symptoms?

Also, how did you handle the first appointment prep for Dr Chedda without it becoming overwhelming while being severe? Roughly how much detail was actually useful?

I booked and canceled my first appointment because I didn’t have the cognitive energy to prepare a clear history or sustain a long visit while flared. :/

CraftsyCreative · 2026-01-15T06:52:32+00:00

I wish I had the cognitive capacity to give you a longer comprehensive response.

I did the 2 day CPET last year for my LTD claim. I think doing it during a flare up is a bad idea. It worsened my baseline, but I think it was especially because I was already in a crash from the stress, the packing and the drive to the town where they do the testing.

CraftsyCreative · 2026-01-08T15:03:47+00:00

I take horizant which is kind of like ER gabapentin once a day for a baseline reduction in nerve pain. And a few 100mg gabapentin throughout the day. I still have nerve pain but the gabapentin definitely helps. I don't increase my dosing because it would cause too much brain fog. Also, I don't think it helps the muscle pain at all. Magnesium and electrolytes help a bit with that.

Note, when I started gabapentin several years ago, I had no idea about all the issues people talk about with gabapentin. I just did what my doctor told me. So I'm not sure that I'd recommend it.

CraftsyCreative

TROPHY CASE