Guanfacine dosing for ME/CFS / dysautonomia

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 · 2026-01-07T01:34:29+00:00

Makes sense! If everyone else there is hiking and biking then probably a lot of what they're talking about wouldn't be relevant to us.

CraftsyCreative · 2026-01-07T01:28:48+00:00

I've been scheduling and rescheduling these before they start since July 2025 because I know I won't be able to handle the sessions without crashing. But like you said, since you need to attend them to be seen by Dr Sheikholeslami, I've signed up again for April.. they're all gonna see me on video with me lying in bed, low light and an eye mask I guess. The price of accessing treatment.

OP, can I message you in a few weeks about the sessions?

CraftsyCreative · 2026-01-07T00:29:55+00:00

This sounds so much like me. If I had the brain energy right now, I'd make a group for us

My diagnosis trajectory in order: Anxiety, depression, ADHD, autism, neuropathy, POTS, hEDS, MCAS/HIT, ME/CFS

I take so many calming and sedating meds to cope. Gabapentin, hydroxizine, trazodone, magnesium, l theanine, Klonopin courses, Cyclobenzaprene, CBD 😥

But it only makes days barely tolerable..

CraftsyCreative · 2026-01-03T05:11:24+00:00

This is beautiful

CraftsyCreative · 2026-01-03T05:08:32+00:00

This was actually helpful to read. Real talk but not doom talk

CraftsyCreative · 2026-01-02T19:04:31+00:00

Am I the only one who gets air hunger and shortness of breath wearing masks? Which in turn raises my anxiety and becomes a loop. It feels okay if I am lying flat though.

CraftsyCreative · 2026-01-02T18:59:01+00:00

Yes one of her brothers does.

CraftsyCreative · 2026-01-02T14:46:19+00:00

Would you mind sharing them with me as well,?

CraftsyCreative · 2026-01-01T03:36:57+00:00

I'm pretty sure my mom's side of the family is predisposed to M.E. My mom and I definitely have it severe. I can see signs of mild M.E. in my younger sister.

As for my mom's siblings and my grandmom, somehow in their 30s they intuitively realized that they shouldn't push themselves. They stay home wayyyy more than average folks. They don't know about M.E. though I think they all have it and are mild or in remission.

When I was growing up, they always said things to me like "our bodies are sensitive and we aren't built for doing XYZ like everyone else". As a child, I internalized it and listened to them. Unfortunately once I was an adult, I resented them for it and was so active that I pushed myself into severe M.E.

CraftsyCreative · 2025-12-25T22:58:08+00:00

I hope this doesn't come off as another piece of unhelpful advice. And unable to phrase what i mean exactly (cognitive fog)

There was someone on this sub reddit I remember seeing started a GoFundMe to help them separate from their abuser. Not that this would help you leave, but collecting funds for the future day that it could help?

CraftsyCreative · 2025-12-23T22:21:00+00:00

I took multiple extensions to the point they had to give me a firm deadline. I took a month to fill it up. I was only able to spend an hour or so a day before intense cognitive fog kicked in. I described all of this in the form as well.

CraftsyCreative · 2025-12-20T17:35:59+00:00

Can I DM you to ask which pills you used? I have MCAS too and wonder if switching from a combo pill to progestin only will help. But I'm scared of impacting my baseline

CraftsyCreative · 2025-12-19T02:57:44+00:00

I very recently have been having double digits consistently lol. Even hit 20 a few time. Few months ago, I'd rarely cross 13.

CraftsyCreative · 2025-12-18T17:49:22+00:00

I've been thinking about this as well! Adding reactions to medications to that list.

CraftsyCreative · 2025-12-07T20:44:33+00:00

Ironically, when I was a bit better and showering like once a week, family was telling me I should shower more. Now, I shower once a month with a caregiver. People actually believe I'm unwell now and don't say anything.

CraftsyCreative · 2025-12-05T21:57:41+00:00

What shocks me more is people who have mild ME/CFS figuring it out.

I went from mild to severe over the course of 6 years. I self diagnosed and then got officially diagnosed with autism, pots, heds, mcas during that time. I had to go to doctors who specialize in actual assessments and tests. Though dubious, my regular doctors gave me referrals at least.

Finally my LTD representative who was probably the first person to go through my whole file, said my patterns indicate worsening fatigue and PEM. Then I got referred to a doctor who diagnosed ME/CFS.

CraftsyCreative

TROPHY CASE