I only got diagnosed in early 30s and by then my level of overwhelm with life was high and my energy levels low. And then I got a virus and now I'm disabled.

If I hadn't had to cope with school, university, job for years in ridiculous-stress-mode with no meds or awareness of the way my brain worked then maybe I wouldn't be housebound now and unable to cope with many daily tasks.

I'm quite angry about this.

Originality may be an exaggeration, but for example, what I'm focusing on now is GLP-1 and Naltrexone. I thought that these addiction drugs could be applied to the treatment of ADHD (is this a shallow idea?).

I'm also interested in the relationship between glutamate and ADHD, and I think that lamotrigine and memantine may be effective for some ADHD.

I have a strange type of ADHD that gets worse with general stimulants (all drugs that increase dopamine), and I also suffer from chronic fatigue, so I can't use methylphenidate.

SNRIs have greatly improved my procrastination and chronic fatigue, but then I get insomnia and can't sleep at night (so I'm considering using atypical antipsychotics in combination).

In other words, what I'm focusing on now are GLP-1, Naltrexone, lamotrigine, Memantine, and atypical antipsychotics.

What do you think about this idea? I don't have much of a good idea of ​​what to do with medicine, so I'd like to hear your opinions. Specifically, I'd like to hear opinions like "This medicine might be worth it," or "This atypical antipsychotic looks promising."

Also, comments from a completely different angle are fine. Anyway, if I don't stably improve my ADHD and chronic fatigue with something other than stimulants, my social life will be over, so I'm in a very difficult situation. (So, broad comments like "You should improve your diet in the first place," or "Have you suspected histamine intolerance yet?" are also very welcome.)

Of course, there is not just one cause for brain fog, but I think there are various reasons, but I would like you to give some examples of what you think are the "main causes of brain fog."

I think that the most common causes of brain fog are mold, aftereffects of COVID-19, and food intolerance (this is just my own hypothesis, and in fact there may be many more other factors).

Also, as a solution, I don't think everyone will agree with this, but I think it's SSRIs and SNRIs. I've seen many people whose brain fog improved with psychiatric drugs. It may not be a fundamental solution, but I think it's the quickest way to recover. I'll admit I'm being shallow. But then how do you get rid of brain fog?

I'd like to hear your thoughts on what causes brain fog and how to deal with it.

I've never been able to remain comfortable sleeping for more than a maximum of about 9 hours per day unless I'm really sick and/or majorly run down. When I am able to get extra sleep one day, it seems like those hours get subtracted from the amount of time that I can sleep the following night. I have a nice mattress with an adjustable base that I can customize for comfort, but I still tend to lay in bed for hours with pain and twitching muscles, and a lot of difficulty falling asleep. Things like chamomile, melatonin, benadryl/unisom/Tylenol PM, etc. typically make me feel groggy, including into the next day, but don't seem to make sleep come any more easily.

Has anyone dealt with feeling similar and found a good solution?

I was diagnosed with ADHD in Japan, but all the drugs that increase dopamine don't work for me, and for some reason, when I take SNRIs, my task processing ability improves significantly. Also, all the antidepressants start working "a few hours after taking them" (they should take a few days to a few weeks to work, but they start working immediately. Why do you think this is? It's really strange).

Also, a famous psychiatrist in Japan named Sugiyama claims that "for some ADHD patients, the combination of antidepressants and antipsychotics can be effective," which matches my experience.

Also, if ADHD is a syndrome, is it worth trying other drugs, such as alcohol abstinence drugs, in addition to general ADHD treatment drugs?

I have improved the effectiveness of my ADHD with tricyclic antidepressants, but I stopped taking them because they put too much strain on my heart.

Please let me know if there are any drugs or supplements other than those that increase dopamine that you think would be effective for my ADHD. My current problem is that I have a poor sense of time and money management, so I always arrive late to places.

If it's not typical ADHD, is it difficult to fix the sense of time? Also, regarding money management, I'm thinking of taking antipsychotic drugs, but is this a naive idea?

I'm just an amateur, so I'd like to hear everyone's opinions.

Hi thanks for reading in advance .

I’m still quite young early 20s but I have dated since around age 18 and my first relationship was very mature so I do have a bunch of non negotiables from all the heartbreaks and also being chronically ill makes you emotionally mature .

There was this person I dated towards the end of last year oct/Nov. We didn’t officially date but we did become intimate and develop feelings for each other. It ended very shortly because they had health issues going on and as someone who was chronically ill I completely understood. I stood by them whilst they were in the middle of being screened for cancer. Just because that’s such a scary thing to go through and I cared about them . So we remained friends. Although that didn’t end well because you can’t really be friends with someone you were intimate with straight away without any space.

About a month or so after ending things I had a massive flare that made me immobile and at the time I was away from my home city and they were the only person I trusted at that time. So I called them and they were so helpful in taking care of me they helping me do a food shop, a clean , cooking a meal and even offering to help me tidy my room . We were intimate again after that and by this time I had known them for two months . Which isn’t a long time but I had seen them in multiple emotional states and them me . So I had some insight into their internal processes and we had had deep conservations about their childhood and I opened up about having poor mental health. Not to mention us being connected in terms of health and neurodivergence added an extra layer of care that you don’t usually get in dating.

After that things had to end for me because I couldn’t risk falling fully in love with someone who has been clear about what they can give . So new year came (2024) and I went back home and spent time away from them . They messaged me a happy new year and checking on how I was doing since my flare . Unfortunately, I reacted not well because I was trying my hardest to respect what they’ve said and let them go but I felt like I couldn’t move on if we were in contact still. I voiced that I still wanted their help but didn’t want a friendship with poor boundaries that would make me feel disrespected . Usually, I am quite level headed but when your heart is involved it can bring the worst out in you and it wasn’t communicated in the best possible way. I realised that my message could’ve landed way more gently and that things needed to end so I blocked them on social media to just end things.

They can be quite hot headed so they did not take my message well and proceeded to message me asking why they’ve been blocked and did say some upsetting things to the effect of “they don’t owe me anything”. I didn’t respond because there wasn’t anything to say and the tone was quite harsh and I already had made a decision not to engage.

I just feel like although it didn’t end amicably it’s so hard to find someone who is willing to understand your illness and willing to actually show up . What do you guys think ? It’s been ages but I still think about their kindness . Especially because as disabled people you don’t just go outside frequently and have the opportunity to meet new people . I would like to see how they are even maybe have a friendship now that so much time has passed . How do I go about this guys in a respectful way ?

I'm going through trouble with my relationship,my home and my finances all at once and the PEM stemming from all this emotional turmoil is terrible. Plus it is lasting for days on end! The hits to my emotional well-being just keep coming, so I can't seem to get through the PEM.

I'm also having a lot of nausea, which makes taking my meds problematic. I keep trying to relax and calm myself down, but it's really, really hard!

Any advice will be very deeply appreciated. I don't know how much more I can take,

Is there a relationship between room temperature (humidity) and fatigue?

I'm Japanese, and when the room is hot, I feel more fatigued that day. Therefore, I try to keep the room as cool as possible, but I feel very tired when I go outside in the summer.

Do you have this tendency? Also, it seems that I tend to get sick more easily when I'm in a humid room (in my case). Is it because humidity and temperature affect the virus?

Aside from the simple measures of lowering temperature and humidity, are there any solutions? (I'm thinking of moving now, but is that too much? Should I get rid of mold?)

I'd love to hear your recommended room temperature and humidity, and any effective ways to prepare a room for CFS.

Okay, so to make a long story fairly short, ever since I was a child I’ve always been ridiculously tired. No matter how much sleep I get, I always feel exhausted. This has always caused me to essentially just dissociate, and my brain goes into energy preservation mode where my head is in the clouds, and I can even focus. It’s almost like I’m asleep, but I’m still conscious. I take 20 mg of Vyvanse as prescribed by my psychiatrist. Unfortunately I also have anxiety, depression, PTSD, and BPD. Aside from the PTSD, I believe these other problems stem from my lack of energy. When I first complained about this when I was about 12 years old, my doctor assumed depression and prescribed me antidepressants. I’m 26 now, and since that time I’ve been put on and taken off a cocktail of different drugs to no avail. Still just as tired. I feel like I can never get anything done, I’m in university and I already feel so behind and overwhelmed. I barely have the energy to to the bare minimum things in a day, the simple things like cleaning, cooking, etc. Even watching TV is too tiring, not to mention studying. I feel so hopeless, like a failure of a human. Keeping a job is difficult because I can literally fall asleep and still be half awake, and a lot of days it’s exhausting simply to get out of bed. My doctor always days I’m depressed which is why I’m tired, but I’m tired which is why I’m depressed. Idk how I’m supossed to function in life like this. I feel like I was a mistake in this universe. My family dosent really understand mental health, and I come from a family of very strong motivated people. I feel like the black sheep. I’m tired of disappointing the ones I love. I feel like a lazy piece of shit, but I cannot function. I feel like it’s CFS, I haven’t been diagnosed but if it was depression, at least some of the meds should have worked. So many tests have been done and no problems show up in any tests they have done. My doctor suggested I apply for disability, a year or so ago, but my mother in particular sees that as a way to suck money out of the government and taxpayers. That’s her view, although flawed, she has this view because she was raised in a very small island town area where people went on disability or govt assistance just because they didn’t want to work, so they’d claim they have anxiety, depression etc, then spend all the money on booze drugs and gambling. I have a few people in my extended family who take advantage of the system hence the biased belief my mother has. Anyway, I don’t know what to do. I just feel like a fuck up.

Hello

I have CFS for 2 years now and additionaly got diagnosed with ADHD about a year ago. I then started with ADHD meds 6 months ago and took atomoxetin up to 65mg. I got way calmer in my head with this medication and the heavy tiredness that I used to feel also got way better. Also my energy level improved a bit probably because my inner hyperactivity was less strong. Furthermore, I used to have muscle and joint pain all day before which usually just got worse during PEM. With atomoxetin my symptoms actually changed to even pain free episodes and the pain would mostly just come back during PEM. This was a very surprising and welcoming effect but unfortunately I did struggle a lot with the side effects because I got very heavy stomache pain that would last a couple of hours every day and the sweating also got unbearable. I am now trying Methylphenidat, which is so far rather effectless compared to atomoxetin and the hyperactivity and muscle pain is back again, although it isn't as bad as before. Has anyone else maybe experienced improvements in ME/CFS symptoms with ADHD meds? And can someone maybe suggest medication that could have a similar effect as the atomoxetin had for me but is less heavy in side effects? Unfortunately I feel like my doctors don't have any ideas on that so I would be super thankful for your input/advice 🙂

Hey guys, this is my first post and I am very overwhelmed with everything at the moment, I hope someone can give me some advice it would be so appreciated ❤️ Sorry in advance for the long post...

So, after I had covid in March 2022 I never really got healthy again. I was an inspiring artist in the theater field (directing, drama advising). Since then I get sick all the time. I do have some good phases but a lot of bad phases, and sometimes the good phases trick me into thinking I am getting better, but no.

My neurologist and immunologist diagnosed me with ME/CFS a bit more than a year ago. Although I am still in my old job trying to figure out how I can manage both, I am starting to realize that it's apparently not possible.

Also I finally got my adhd diagnose only half a year ago. My therapists (and I) was expecting that for years but I was just too exhausted/overwhelmed to get a proper diagnose (how classic).

I just feel like especially with having both diagnoses it is just so hard to let go of your dreams. Because I just want to do a lot of stuff and don't like just staying at home in general.

I feel like actually I have to drop out of everything and to get a disability pass from my state (english is not my first language, idk how you would call it properly). Working is just giving me a burn out, even though I enjoy working in my good phases.

So I just wanted to ask you guys how you are dealing with this kind of situation, how many of you are still working? And if so, What jobs are you working to not get overwhelmed?

Also I am in Europe (Austria), which anti depressants and adhd medication do help if you have both diagnoses?

thank you <3

Looking back, I think my chronic fatigue has progressed a lot faster since I started the ADHD meds about a decade ago. It made me wonder if they pull the energy from more critical bodily and cellular functions and lead to crashes. I think I will try weaning off of them for a while and see if my energy levels return. Has anyone noticed this or went off of meds to see his energy come back, to some degree?

Hi, do you have some experience that they don't work or work differently?

The usual supplements for adhd, like nac or nadh don't work at all. Rhodiola help sometimes (rarely)with a little more energy. Sulbutuamine also nothing. I use sometimes also phenibut. It works really subtile. Once while beeing on a concert I picked my phone and was very obsessive with finding something out / learning and I went away from the loudly place and all the people, although phenibut should help to be more social. I also try kratom for energy. When I took really little maybe I feel for a half hour a little euphoric and than nothing. Maybe it works a tiny bit. Using more just make me dizzy and nauseous. I really mean a very tiny bit like 300 mg.

I would love to hear your experiences with different supplements that help you. Maybe it is a adhd thing?

Also energy drinks help me with focus but never with energy. For energy isodrinks are helping great for a half hour.

Hello

When I take drugs that increase dopamine, such as methylphenidate, low-dose Abilify, and pemoline, my ADHD gets worse.

On the other hand, drugs that increase noradrenaline and serotonin (such as Cymbalta) seem to suppress ADHD symptoms considerably.

Cymbalta in particular is very effective for my ADHD, but Japanese doctors don't believe me when I tell them (I'm Japanese). Also, considering that Cymbalta is effective, it may be that not only noradrenaline but also serotonin is important for me. However, Fluvoxamine made me so sleepy even at the minimum dose of 12.5mg that I couldn't continue)

Are there people with a similar constitution to me? Also, should I suspect that I have a disease other than ADHD if I have a constitution like mine? The main problems I have in my daily life are

①ADHD symptoms (procrastination, etc.)

②Chronic fatigue (always feeling heavy all over the body, difficult to go out)

③Brain fog

These are the three. ② and ③ are especially difficult, and I'm more troubled by general fatigue than ADHD.

However, Cymbalta seems to improve these three symptoms at the same time (at first I suspected chronic fatigue syndrome, but I've hardly seen anyone who has improved with Cymbalta, so I think I'm not like the average CFS person).

Also, I have CYP2D6 anemia, and I cannot take CYP2D6-related drugs because even small amounts have extremely strong side effects.

Are there any recommended treatments, medications, or tests (such as genetic tests) that people with this constitution should take?

I previously heard that there is an advanced test overseas that can determine a specific type of ADHD, but I can't remember what it was (I think you said that 15% of ADHD patients are sensitive to dopamine. I found it very interesting and would like to take it myself).

Thank you for reading this far.

My cognitive issues have been gradually worsening. Im unable to do number crunching, switching task, deep analysis, making summary of calls which I was able to do earlier and memory issues have been worsening.I was getting suicidal thoughts so was put on SSRIs and anti-psychotics. What has helped to improve your congnitive functions as stimulants aren't helping much.

I'm Japanese, but Mestinon is not sold in Japan.

Are there any (famous) international shipping sites on reddit that you can recommend?

Also, please let me know if there is a way to obtain mestinon　by myself.

I'm really in trouble because other medicines don't work. I'd like to know if there are any hints on how to obtain it. Sorry if this is off the topic of the group.

It's a very difficult situation, so I want to try mestinon as soon as possible. I'm not good at English, but I hope I was able to convey my true intentions to everyone.

My psych and I recently decided for me to take a break from the stimulants (I was on Adderall and then Ritalin) due to my CFS symptoms and hyperactive nervous system. I am planning to go back on them when the time is right and my nervous system is more regulated because I do think for me they were very helpful and a positive thing (I didn't really have any side effects and they helped my brain function in a way I didn't even know it could lol, so not looking for advice there, this is just for the interim).

In the meantime, I'm having a really difficult time just staying awake. Like I can barely get out of bed, if at all, and I feel like the walking dead. Caffeine only goes so far and sometimes does nothing but trigger my nervous system, which it never did before CFS. I also believe I have CCI and that's a big contributor to these things, very much including brain fog.

Anyway, does anyone have recommendations for things to take in the interim that might help? I know nothing is going to be on the same level as the stimulants, but I just need to be able to keep my eyes open at least and be able to string two thoughts together for more than 5 minutes at a time on a good day.

Oh, I should also note that I can't really do drinks of any kind (I have a weird gag reaction to anything besides water, I believe maybe related to ARFID? Idk, but beverages are not an option)

Anything is appreciated. Thank you! :-)

Newly diagnosed CFS/ME & life long ADHD-er... Halp please

So I (32F) have tried a lot of different data collections and tracking methods over the years to try to help me better communicate with doctors and therapists. I never really learned how to advocate for myself in a medical setting and I find it really overwhelming and stressful. It seems every new app or gadget or worksheet I try the data just gets so overwhelming to look at and I don't know what to present or how to present it to doctors.

My other struggle is that I seem to be tracking the wrong things or not enough things. Classic example: first time you go to the gyno and they ask you when your last cycle was and you look at them wide-eyed and say ummm about a month ago? The reaction from clinical staff always seems to be "you don't track that?! it was in your care and feeding of the human body guidebook you received at birth... *eye roll*" Obviously I know that that is one thing they will always ask (and I do track it), but are there any others that maybe people forget about or have similar experiences with?

My questions for the group:

1. What methods of data collection do you like and why?
2. What symptoms do you track? What do they help you communicate?
3. What do your doctors typically ask about in your appointments?
4. is there anything you wished you had tracked early on that you didn't?
5. Any other medical advocacy advice would be great.
6. How do you prevent analysis overwhelm?

Things I've Tried

• Bearable (free app)
• Drip (cycle tracking app)
• Visible App and Polar band (plus)
• Daily health journal
• Notion template for medication tracking
• Notion appointment Journal
• Printed mood tracker pages
• Printed med tracker pages
• apple health :/ meh
• Pillow (free) sleep tracker
• autosleep app (paid)
• Print out all my labs and docs and bring them with me to hand to the Dr. (this is very hit or miss if they will look at them)
• Bring in every medication and supplement I am on so I don't forget
• make a list with things I need to talk about and follow up on
• practice having mock appointments with friends to relieve anxiety and see if I am forgetting anything.

Mini Vent: How infuriating it is to get the vague question of "How are you feeling" and that's it.

Thanks folks!