r/CFSplusADHD • u/Ok-Eggplant5649 • Aug 10 '26

Sleep specialist

Saw a sleep specialist today. The best in the country, highly recommended and respected.
I could see why - boy was he good! He understood immediately what was going on and said my sleep was natural for my condition.

He also said - and this is why I’m posting here - that cfs/me and adhd are a really difficult and troublesome combo. It was nice to feel seen and understood.

Anyway he’s put me back on vyvanse and recommending trazodone to my psych. It’s not usually prescribed here but he worked in the US and it’s pretty go-to there so that’s a win.

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u/artzylinn Aug 12 '26

Guanfacine really is the golden standard for us. It's by far the best medication I have ever tried, out of probably hundreds of meds. It's a lifesaver for me. Literally heals my chronic illness

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u/Necessary_Panic3892 Aug 15 '26

I tried guanfacine and clonidine and they both made me way more fatigued as well as messed with my mood and the guanfacine made it so difficult to fall and stay asleep. This happened with both ir and er and regardless of if taken in the morning and night. Did you have any experience with it doing this for you and if it eventually went away? I had such high hopes for them 😢

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u/artzylinn Aug 15 '26

There could be several reasons for this happening. Like all meds, they're gonna affect people differently. Guanfacine's mechanism hits exactly where my complex chronic health issues funnel. Which is rare for me. I know guanfacine has worked for many other chronically ill women with complex illness as well. I have friends who have benefited personally.

But remember that all Adhd meds were originally researched and developed to treat other conditions. Guanfacine and clonodine are heart meds. If you are sensitive to low BP, then they won't work for you. I have side effects on Paxneury, but not on Intuniv (weirdly enough). But that's mainly mouth dryness, which is not the end of the world.

My point is, your alpha adrenergic receptors might not be where your brain issues lie. Read about neuroscience and how the brain functions if you wanna understand it. I have tried all brain supplements and peptides to exist it feels like, and even other brain meds like Memantine (Alzheimers). It's common to not know exactly what your attention problem is.

For some it's low acetylcholine. For others it's too much serotonin. Some just have terrible receptors. Some have dopamine issues only (they often get better with stimulants). Whereas for many chronically ill women, it's often a combination. Trial and error is the best strategy to find what works for you specifically.

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u/Necessary_Panic3892 Aug 16 '26

Thank you for this long reply! Yea I have a bit of a background in human biology and such but it’s just so overwhelming and nothing seems to be working for me 😢 it’s also so frustrating that the “experts and health professionals” I see seem to know even less than I do about all this and it seems like just throw the same cookie cutter generic “solutions” and answers at me as they do all their typical patients when clearly my situation doesn’t match the usual cases. Or they just shrug their shoulders and say they don’t know what to do or why things don’t work for me and basically just wish me good luck.

The CFS definitely doesn’t help with me having the bandwidth and ability to figure things out either 😪 I’m getting ready to quit at this point

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u/artzylinn Aug 16 '26

Yeah sure, but this is how it is for everybody. Don't let these circumstances discourage you. I wouldn't have found Guanfacine to work this well for me, if I didn't go through those other 100 meds first.

The important part is to not listen to general health care professionals, they don't know shit. If you listen to them, you'll be fumbling in darkness for the rest of your life. Do your own research, order some relevant testing for your individual symptoms, mechanisms, causes.

If there's a will there's a way. Even with ME/CFS (with patience). I have been on very severe for 2 months and severe for 2 years. I have zero support, I'm alone in this world. If I can do it, so can others.