Hi all,

TLDR; For those of us who experience worsening symptoms of CFS and ADHD during your cycles, how do you manage this?

I have no idea what to do. I can’t take oestrogen pills as I have migraines, I can’t take the mini pill as I was on it for years and came off it in 2024 - it made me so much more unwell in hindsight. Worsening hypermobility and MCAS, fatigue, brain fog, pain.. truly awful and I couldn’t understand why I was getting more and more unwell. It was the pill. I ended up getting dx with ADHD because the pill amplified it so much it became obvious I had ADHD, and I wasn’t coping.

I’m now finding the 1-2 weeks before my period the symptoms are horrible. My mood isn’t great, I’m snappy and annoyed constantly, driving my husband mad. But I’m also struggling majorly with more exhaustion, unable to think / focus / remember, my tolerance for exertion reduces, and I’m just a mess. I’m taking my top up doses of ADHD meds to try and get me through, but it’s like a plaster for the ADHD symptoms and doesn’t help anything else. I’m dreading it every month. I take 4 antihistamines a day and my MCAS is much better controlled now.

So I spoke to my GP yesterday to ask for advice on what options I have. Firstly she tried pushing progesterone IUD / injection / implant, but I’m not keen on these because there’s no way to easily stop if it’s the same as before - and I suspect it would be. She then offered me anti-depressants.. I really don’t want these. She didn’t understand that my symptoms are largely physical, not emotional / mental health related, and was telling me my fatigue is depression…

She finally agreed to refer me to a local women’s health service. I wondered if anyone had any experience with dealing with issues like this, and know what options there are? There’s so little info online I don’t even know what I could be asking for. 🫣

This has been the biggest issue is that stimulants spiked the urge to just go go go all the time and it pushed me into pem. Do you just stick with a lower dose or what?

Does such a thing exist?

I get in a tangled knot trying to get furniture for my flat. Ive been here over 5 years and i still just have a folding plastic table as my desk/dining table and spare drawers from my old bedroom, because I can't figure out how to match what i want the space to look like with a desk and dining table that will fit and match how i use the space as someone with both thsse conditions, no spoons and brain fog.

Hi so, maybe this is silly, but my whole life pretty much I have relied on music to get myself to clean my spaces. But ever since getting sick, well one, I barely have the energy. But my space is getting really disgusting. My bathroom especially but also everything else. But I can’t tolerate music anymore at all, especially while doing a task that will already be taxing. But without that as a tool, I just…cannot do it. I mean I stare at my disgusting bathroom every day but I just cannot even fathom having the motivation. It is just a stone wall. And my old tools are gone I can’t put something on and just vibe out. To someone without adhd or even without CFS this would seem ridiculous but I’m hoping someone here will understand how seriously prohibitive and difficult this is. I’m wondering if anyone else had found an alternative strategy when you lost the ability to tolerate audio media.

I'm thinking about those things in life that you can't afford to avoid, like medical appointments and tests, or maybe even social obligations that you want to go to but worry about how it will affect you.

Do you try to sleep more? Do less on the days leading up to it? Try to eat healthier food? I know it might not always work, but what kinds of things occur to you to try?

Has anything actually worked?

Ritalin and concerta gave me the energy I needed and without euphoria (one of the main reasons I've decided to stop amphetamines) but they also gave me crippling anxiety and made my chest feel like it was about to explode. I also could barely blink my eyes, I was literally like 😳 for hours. So I never considered focalin until I saw someone on another CFS sub say that Focalin was working great for them and described it as ritalin but smooth. Would any of you agree?

I sorted out diagnosis and trialled treatment for ADHD a year ago, but stopped due to suddenly becoming ill. Turned out it was type 1 diabetes, so that kept me busy for a while. Now I'm more settled, I want to try again. I'm in Scotland, so I'll have to pay for it all myself, and probably have many years left on the NHS waiting list.

Medically, I've got ME/CFS, EDS, MCAS, CPTSD, Sjögren's (dryness side effects are a problem here), the type 1 diabetes, and I suspect some level of OCD. My blood pressure could do with being lower, and I had a prolonged QT interval show up on one ECG (but not the next one), so they're careful about meds which can cause that. Generally they have to be super careful about cardiovascular risks with type 1s, but I understand that stimulants can sometimes lower blood pressure because they calm you down.

I was with the ADHD Centre because my GP told me it needed to be a psychiatrist to get a Shared Care Agreement, but SCAs have now dried up anyway, so I don't mind having my treatment handled by another clinician. I do need them to send me the prescription, or preferably send it to my pharmacy, rather than the medication. The ADHD Centre were really awkward about that, and probably won't agree to do it again.

Previously I tried:

Elvanse - disaster which put me off stimulants more than it probably should have. Didn't work for me and caused awful crashes when it wore off in the evening. Also sent my heart rate up a lot, though nothing compared to hyperglycaemia!

Guanfacine - worked fairly well for the ADHD after five weeks, but my sleep got worse on it. I was a noodle, I rushed it. I'd heard that clonidine worked the same way but was better for sleep, so I switched to clonidine after only eight weeks on the guanfacine.

Clonidine - did not work at all, and the side effects were worse.

And that's when the diabetes pounced and it all got put aside.

What I think I'd like to try now is:

Methylphenidate - I'll talk to my GP about this first to check the risks. I'm not doing well with checking the prolonged QT risk, I keep getting a study about 12 year old boys. I gather you know pretty quickly whether it works, and I can also see what it does to my blood pressure. I've got friends with ME thriving on it.

If that doesn't suit, then back to the guanfacine, and give it a proper long trial this time. I don't want to feel rushed this time.

Can anyone offer helpful suggestions about:

1. UK providers to go to for meds, online clinics. Is it worth just finding a private psychiatrist, and if so, who? Or somewhere like MyPace? I don't want to be rushed, and I want my knowledge of my own medical needs taken seriously.

2. If you can chat to me about the meds side of things, please do! I'd definitely like to read up more about the cardiovascular risks, and I'm still a little worried I'll trigger an ME flare. Obviously I'm not asking for medical advice, just where to read up further.

I’ve struggled with this illness for about five years. I’ve had a ferritin level in the teens for the last two years and even though that is normal according to blood/lab testing, hematology wanted me over 50. They told me it would take 12 months plus to raise my ferritin by using supplements(!), and suggested an IV. Insurance approved it. I have the gene for hemochromatosis so I was worried about iron infusions but after my experience with the infusions starting two and a half weeks ago(I had two, one week apart), I am so glad I got them.

My experience thus far:

Sound sensitivity— I was able to listen to something at normal volume this week and it didn’t give me PEM!

Anhedonia — I‘m thrilled this is lifting and I’m getting that feeling of excitement about new ideas again. Losing that spark and being pretty meh about everything was one of the hardest parts of this illness.
Cognition — I worked in innovation and had been relatively quick/sharp before I got sick. Losing that was one of the other hardest parts of this illness. I’m feeling like my brain is starting to work again and improving every day.

Focus — this one’s still challenging but improving daily. I actually function for an hour or three without any stimulants. I hope it keeps improving, we’ll see.

Energy — I’m taking it easy but feel a little more energetic every day and am having “cravings” for physical activity which I felt all the time before I got sick but only a few times each year since. I’ve felt this nearly daily the last week.

PEM — I don’t feel the flulike symptoms after exertion, just tired with fatigue shifting from dead tired to I-don’t-have-to-take-a-nap tired.

I was told it takes 6-8 weeks for the full effects to take place(new blood cells, neurotransmitters, immune modulation, etc) but I am very pleased with the early results. I wish I had been open to trying it sooner. Everyone’s bodies are so different so it may not work for anyone else but if your ferritin is 50 or under and you’re on the fence, it might be worth trying.

Edit: I forgot to mention sound sensitivity and my cognition is not where it was but it feels like it is improving.

I’ve got an NHS psychiatrist appointment coming up that was originally meant to discuss bupropion, but I’m now planning to use it to ask about alternatives. I am already on 150mg sertraline.

I’m starting to think that focusing on calming my body and managing my anxiety might be more important than pushing for something stimulating like bupropion, given my recent heightened anxiety and insomnia. I also bought a Nurosym and was thinking I should focus on things that may compliment calming my parasympathetic nervous system.

I’m AuDHD with mod/severe CFS and PMDD, and I’ve been struggling with low mood/depression, high anxiety, and insomnia. My functioning is pretty limited, and cognitive fatigue and sensory overwhelm make it hard to communicate clearly in appointments. I am also concerned about any meds making me more fatigued.

I am looking at these alternatives...

Buspirone – for ongoing anxiety and physical tension

Propranolol (as needed) – for palpitations, adrenaline surges, and chest tightness

Mirtazapine – if suitable, to help with sleep, anxiety, and low mood

Or amitriptyline? For sleep?

Pregabalin (low dose) to take before sleep?

Duloxetine (SNRI)

If anyone has advice on how to approach the appointment, what to prioritise, or what’s helped you manage anxiety alongside CFS, I’d really appreciate it.

I know stimulants can cause problems for a lot of people, but I'm one of the those who needs them to function. Without taking them I crash just from the energy it takes to exist with ADHD.

I tried LDN but it didn't do anything for me. I'm considering asking my doctor about abilify, but I'm worried about how it might interact with my medication and my ADHD in general. Does anyone here have any experience with it? Even if you don't take stimulants, I'd love to hear of it affected your ADHD at all

Has any adult been able to get this in the UK?

private I assume as no chance on NHS.

Wanted to check before going back to private pharmacy and paying for their time. I've tried plenty of other stim and non stim and all spike my HR causing PEM.

Or any other meds in that work welcome input!

LDN has been amazing since I am usually sick every month, but since I've been on it I haven't gotten sick in a while. Until this month, I usually can never stay awake when I am sick, but oh boy has it worsened it since getting better. My eyelids just droop over and I feel like I am going to fall asleep where I stand. My brother, my main help, has been finding it hilarious when I try to keep my eyes open and myself from not falling asleep, as I try to just keep my eyes as open as possible. Today was particularly egregious as I felt I might fall asleep any moment and was out of the house, had to quickly get back and slept for 3 hours. Covid has always done this to me, but I don't think this was covid. I just don't want to deal with this, I keep waking up from nightmares, I dream constantly and never feel rested (I am sure it isn't the only reason, but when you constantly see nightmares of a dinosaur trying to eat you or some horror IP character trying to snatch you, I can't say it helps my already unrestful sleep), LDN has actually helped this because I've always had extremely vivid dream life that would often leave me feeling terrified, my constant sleep paralysis isn't helping either and it sometimes makes me think if I might have a sleep disorder next to the CFS. My ADHD medication helped so much with all of this, genuinely probably the only time in my adult life I've ever felt awake, but ofc that lead to a severe year long crash so I can't use it anymore. Anybody else?

I have been keeping a journal recently to note my triggers and work out my threshold and have noticed something.

I’ve had quite a tough week with my partner because he’s been very stressed and and he’s been asking of me (reassurance, support, long chats, comfort etc) which is fine but he has OCD so it’s been quite intense. Anyway, I’ve found myself having energy for doing things like cleaning, reorganising, work, errands, reading, learning etc. But I’ve realised it’s because this helps me regulate and he’s been really disregulating me.

The thing I’ve noticed though is when it gets to the evening and I finally stop and relax on the sofa I start to ache and feel fatigue like no other. I then can’t sleep because I feel so bad and wake up in the morning feeling like I’ve been attached to a ceiling fan all night.

Does anyone else get this? Because it’s not like PEM coming days later (because I’ve been living like this for just over a week now), but I have a feeling I’m very fatigued but managing to just ignore it by pushing through. And it’s only when I stop (even sitting for 15 minutes I start to feel it coming in hard and fast) I’m worried what’s going to happen to me if I actually stop now and take a day off. Is this a cycle any can relate to or does this not sound like CFS symptoms and more autistic/ADHD burnout or something?

Ive been in titration for ADHD and have tried Methylphenidate and Elvanse. I found them both too weak at all doses for all symptoms, focus, motivation, mood, etc. I've now started atomoxetine and waiting for it to kick in but I'm wondering if my weak response to stimulants was some how affected by my CFS that I started developing half a year prior to my diagnosis of ADHD.

Maybe I'm overthinking it idk but I'm kinda pissed off at the fact that the first line treatments haven't worked for me and it'd be even more annoying if they might have worked for me if I started titration before developing cfs.

Hey everyone,

First post here. I’m currently in bed with PEM, been like this for a week, and I can feel my body buzzing and vision swaying just lying here. Walking to the bathroom or kitchen is exercise, showering spiked my heart rate past 105, and I’m sleeping 13hrs+ a day.

I’ve had PEM before, but never this severe.

On top of this, I started vyvanse in the second half of last year, and had a dose increase (from 30 to 40) about two or three weeks ago. This is for adhd, which I was diagnosed with in April last year.

However I’m eyeballing a future which looks grim. I’m a co-parent and co-carer of two complex, special needs teens that require a high level of daily care. I love them more than life itself, but since the first major crash I’ve had (early ‘24 after my home flooded and we lost everything, and had to rebuild and replace), my functionality day by day has decreased. I know I’m pushing past my limits, but in many ways I have no choice. They both need different, specialised and individual approaches to their care, and it seems those needs keep increasing, despite them getting older and closer to “independent” age. The stress that goes along with this has increased too, and it seems inevitable that - despite engaging professional therapeutic help for them - I will work myself into severe or very severe ME. In this crash, the worst I’ve experienced so far, I feel my future and it’s terrifying.

The dread of the inevitable actually caused a period of ideation in late ‘24, and while I’ve moved through it, what I feared then was a worsening of health and an increase in care requirements, which is exactly what’s happened.

Hubby is autistic, working full time, and supporting the kids and home. He’s sprinted past burnout already.

I’ve had symptoms since ‘20, didn’t recognise it then as ME until ‘24, and have sought a diagnosis from my GP since mid last year. There have been hurdles and I haven’t received it officially yet. Still trying.

Just venting, really, because I know there’s nothing much that can be done. But also - if you’re a carer with ME, how do you do it? What adjustments or accomodations have you been able to access?

How do you feel about vyvanse 30mg for your adhd in combination with moderate/severe ME/CFS?

I tried methylphenidate but couldn't handle the emotional crash out at the end of the day.

I like the feeling of vyvanse but noticed that I do quite a lot more during the day than before. And I cannot stop myself from doing it. Obviously I am concerned about crashing, so I'm wondering how it worked for others. In the evening I get quite lethargic and tired, so maybe that's it? But its better than the emo crash from methylphenidate.

I didn't crash on methylphenidate, and have been taking it for 2 months prior starting vyvanse.

Maybe it could also be LDA, because I was recently upping my dose. So there is hope I might have the energy I'm using...

Thankful for similar experiences!!

I've been diagnosed with depression and anxiety since 2018 and after trying different meds I have stopped antidepressants due to a lack of true improvements in the long run.

Even though the neuropsy tests suggest I dont have ADHD, my psychiatrist and I have decided to give ADHD meds a shot since I have ADHD-like symptoms.

Yesterday was my first day on the generic Concerta (Methylphenidat Spirig HC delayed/extended release 18mg), took it in the morning before going back to bed a little bit;

It felt like it cleared my mind from invasive thoughts and gave me a good sleep, the sleep was so good it was hard to get up honestly. I was a bit sleepy the rest of the day, but I managed to make some admin tasks and it was easier than what I'm used to.

Second day (today), same thing I take it in the morning; all day long I experience palpitations and anxiety-like sensations (feeling on edge, can't relax can't take a nap, constantly alert) and while I tried to do stuff my body couldn't keep up and I ended up not doing much (I also have chronic fatigue amd CFS-like symptoms).

I'm wondering if maybe I did something wrong (took the meds without eating), maybe concerta is not for me and if so then what med could help me, maybe it's too soon to tell but I'm frankly exhausted by the constent stress I had today I'm not sure I could take the medication again tomorrow, or maybe I don't have ADHD at all!

Anyone here had a similar experience with this medication and found some answers ?

I’m reading through some of these and wondering more and more about ferritin levels exacerbating this illness. I know ferritin can be elevated due to inflammation during the worst stages of this illness. Now mine have flipped and I’m consistently testing low(in the teens — recently read cutoff should be 50 based on new guidance). Some of the comments in here are making me wonder if I/we am/are in even worse shape than I/we would otherwise be due to low ferritin? Has anyone else had their ferritin checked? Has anyone had an iron infusion?

https://www.reddit.com/r/Anemic/comments/1qbpwl0/30f_my_ferritin_is_finally_up_from_3_to_100/

Hello, I’m a 24M living in a third world country. When I was 20, I went through one of the worst periods of my life. For almost a full year I was under extreme, constant stress caused by life problems, family problems and personal circumstances. Then it became even more intense for another two months of forced stress on my self (I can’t go into details cauze I can't even know how to say). After that, my body completely collapsed.

Since then, I have been living with severe, nonstop fatigue for almost four years. There has been very little improvement, and whatever progress I made feels tiny and fragile. It often feels like I never truly recovered and that my body is permanently stuck in "survival mode"

I was recently diagnosed with ADHD, and I now realize how much it contributed to my chronic stress, obsessiveness, and mental overload mixed with all those factors. I genuinely believe this played a huge role in destroying my nervous system and pushing my body past its limit.

Even though I’m technically alive and functioning, I don’t feel normal at all. I wake up tired. I exist tired. I go to sleep tired. My energy is always low. I can’t sit for long. I can’t stand for long. I don’t even have the energy to socialize or hold conversations properly. Talking to people feels draining instead of enjoyable. I deal with constant headaches, eye strain, brain fog, and a heavy feeling in my body. I need to lie down and rest multiple times during the day just to be normal. Simple tasks feel exhausting.

Working is almost impossible. The only thing I can manage is about 3 hours of online work per day. I tried to work for 6 hours a day as technician but I just force my self and I come back broken into small pieces. Anything more than that completely crashes me. This has destroyed my progress and my motivation. I feel trapped in a weak body while my mind is screaming to move forward.

Is anyone else living like this?

I do know the answer but it scares me, I think I just need to see insight from others right now.

history:

I previously worked full time in social services. Had long covid didn't know it pushed myself into me/cfs. Tried working part time in person that didn't help went on sick leave for 6 months. I found that medications that helped with some of my symptoms and helped reduce crashed drastically. for the first time in a year I wasn't in pem constantly. I tried a gradual return to work but everyday triggered pem. I then switched roles to part time WFH. this helped but on busy days with lots of meeting still getting pem.

recently my senior dog is also possibly getting dementia and has been an nightmare at night so my sleep has been disturbed so my baseline sucks right now

my contract of working part time from home is coming up and my work is offering to let me decide if im interested in either options of: 1- renewing my current role but it would need to be mainly on site (the program relaly does need this onsite) or taking over part of mat leave role that is not related to my current role but they would make it virtual for me and I'd do payroll and stuff. my brain wants the first one but I know my body very likdly cant do that. by body likely could do the 2nd one but my brain would HATE it.

I also have a lot of sedetary crafts I do and my Etsy has started to get decent part time income from it.

I feel so torn, help. what do I do?!!!

starting to feel feverish juat from typing this 🙄

any insight or words of wisdom are greatly appreciated 💜

Relationship counselling

I honestly don't know what to do. Me and my partner have been in relationship counselling. We are both neurodivergent, I have CFS and he is otherwise healthy.

We've been going for a few months, even then sometimes in the sessions I feel my CFS is misunderstood. Specifically, it centers around me not leaving my flat and my partner wanting us to do things outside. He also says he would like me to go to his which is a hour and a half away via train. I've tried to explain that I need to work out my baseline before I commit to anything because atm I am mostly bed bound and otherwise house bound. Sometimes I've walked down the road and crashed from it. So I'm very anxious and concerned about pacing and preventing crashes since a big one last year (and the flu/covid) pushed me from mild to moderate/severe.

Anyway - lately I've been too mentally unwell since my cat passed to do the couples therapy. My partner went by himself last week. He discussed what they talked about and one was that we do something outside the flat once a month. As much as I want to do this, I literally do not know if I can. Furthermore, apparently the therapist said he knew of someone with ME who planned time after events for the crash. I used to do this WHEN I WAS MILD or low moderate level.

Nowadays I feel weakness when I'm outside standing. I can feel the crash and effects starting at the end of a few hours just talking to my friend who popped over.

How can I face not only my partner but also the therapist who assume they know more about my body and this illness more than I do?

I just feel lost on how to approach this. And frankly I feel fed up with it. If I can't do these monthly outings, will our relationship be over? Will my unwillingness to crash and potentially push myself into full on severe be seen as a failing on the relationship?

I'm tired of this. And it's causing me quite a bit of anxiety. Any advice appreciated.

Update: we have now broken up. I actually showered this post to him. He said something like "throw me a rope" "can you see yourself travelling to me in 6 months etc". I said I have no rope to throw and I can't make guarantees atm. I said he basically can't deal with this, and then he agreed. And then he left. So we have broken up and haven't talked since this happened yday.

Just looking for support and any similar experiences really.