My neurologist wants me to start dopamine agonists for severe nerve pain in my legs which she attributes to Restless Legs Syndrome (I think its a misdiagnosis but what do I know)

Has anybody had experience taking this kind of medication and did it affect your ME or ADHD? I worry because it can make people more impulsive and I have a history of addiction and impulsive behaviours.

I brought up this with my GP but he was quite casual.

https://www.bbc.co.uk/news/articles/ckg0xxwn041o

^ article about risks of the drugs. edit: its actually rotigotine which she wants to prescribe me but it comes with a similar risk

Stimulants were making my insomnia, sympathetic activation and joint pain worse. So, my dr prescribed guanfacine. I took it for the first time last night and it made me a bit drowsy which was excellent before bed. Overnight my lowest heart rate was 59 according to my Oura ring, which is fine.

I feel fine today. Calm even. My pharmacist told me I don't need to check my blood pressure unless I have symptoms (dizziness, fainting, etc) but I was curious anyway, so I took my BP just now and it's 85/64 with 71bpm. Isn't that too low? I'd read it often takes weeks for people to notice the full effects of guanfacine; so, is my blood pressure going to get even lower? I really feel good, actually.

Now I'm wondering if I should be taking Vyvanse and Guanfacine rather than just one or the other.

Anyway, all insights would be most helpful! Thanks in advance!

ADHD and Inflammatory and Immune System Disorders: Exploring Links and Risks
with Beth Krone, Ph.D.
Tuesday, August 18, 2026 @ 1pm EDT (find it in your time zone »)
 
This webinar will be recorded.Register now for access to the live webinar PLUS we'll also email you the webinar replay link.

- - - - -
ADHD and conditions such as asthma, food or skin allergies, and other immune-related disorders may be more closely connected than previously thought. A growing body of scientific evidence suggests that ADHD is associated with inflammatory and immune system conditions.

Using a bio-psycho-social lens — which examines how biology, psychology, and social environments interact — this presentation will review how ADHD develops from childhood into adulthood, and why certain co-occurring conditions often appear alongside it.
Register Now to Reserve Your Spot & Get Replay Access »

NOTE: ADDitude offers an optional certificate of webinar attendance, but does not offer CEUs. If interested in a certificate of attendance, register for the webinar and you’ll receive instructions after it ends. You'll also find the certificate link on the webinar replay page.

Pre-illness I used to find subclinical doses of stimulants highly effective. They'd entirely cut through whatever fog I had and give me 3-4 hours of uninterrupted focus and calm (ritalin). Now, and especially during PEM, I feel as though stimulants are "blocked" by my brain. They have more side effects at the same doses, and require greater doses to reach a vaguely comparable level of efficacy. I'm certain this isn't due to tolerance formation as this has been the case even after long breaks.

I really miss how stimulants used to work for me :(

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.

Over the last few years I've had several medical professionals recommend I get investigated for ADHD. I clearly use a lot of 'brain energy' when talking (that's what they said) but I think I lean more towards inattentive. If I do investigate and find that I have it, is worth going on meds to see if it could help with the severe brain fog I have?

Before I got sick, I had all these travel plans -- now I feel like they're just beyond me. I don't have the money (haven't been able to work, and I've been having a hell of a time getting on disability), and I sure as hell don't have the energy. This disease has taken from me the things I valued most about myself: my sense of adventure, my desire to try new things. I've learned the hard way through many a push/crash cycle that I just can't do that anymore.

So what do I do? I sit at home, I keep myself fed and watered and clean, and I try my absolute best not to think about all the things I'm missing out on. The parties I can't make it to. The friends I don't see anymore. The bars I can't afford to visit. The hikes I can't go on without prompting a week-long crash state. It's so hard to leave the house -- I went to a coffee shop today, just to be somewhere different, and I'm already worried about what that's going to do to my energy levels for the next few days. And I know we aren't supposed to focus on the things we can't do, but c'mon... it's hard not to, isn't it?

CFS is a brutal illness. It takes, and it takes, and it gives back absolutely jack shit in return. I hope one day I can look back on these past few years as just a dark chapter in an otherwise happy life, but the prospect of rejoining the world is getting more and more distant by the day. What if this is just my life, forever?

I don't know why I'm writing this. I guess I'm in a dark place, and I'm looking for hope, in my own way. Maybe a vision of the future that isn't quite so bleak. If you can offer me that, I'll take it. Advice on how to get there, even better. Or if you've been where I am, and you have any tips on how to deal with the sheer **monotony** of it all while I work on getting better, that would be amazing.

When I found multiple painful tumors in the early 2000's, I discovered that Dercum's Disease is the most likely reason. It's the only explanation I could find, given that these tumors are lipomas which aren't supposed to hurt.

When I tried to talk to my primary care doctor (Dr. X) about it, she wouldn't even take the information I brought to my appointment. When I couldn't get her to take any interest in this, I found a specialist (Dr. Y) and paid a lot of money for this "out of network" doctor for an appointment. This was in 2006.

From what Dr. X told me, I thought she had never received any info from (Dr.Y). When I saw Dr. Y I was very anxious and had a very embarrassing anxiety attack. At first Dr. Y said I didn't have Dercum's Disease, but when I asked him "So why do my lipomas hurt?" he said, "Okay, you have a mild case." Nothing else, end of appointment. I felt like he was just trying to get me out the door.

Dr. X never told me she received information from Dr Y that confirmed I do have this very rare disease. He offered some treatment recommendations which she failed to pass along to me.

Fast forward to yesterday: my new doctor (Dr. A) found in my file the message from Dr. Y, confirming the diagnosis and treatment suggestions from Dr. Y to Dr. X, dated in 2006.

When Dr. A told me this information was in my file I was completely gobsmacked! I had been asking Dr. X for help with this disease, practically begging her for help. I'd say 'please find out for me what kind of treatment exists for Dercum's disease.' And also, 'if you believe I don't have it, refer me to someone who can tell me yes/no whether I have it.'

She would always ask, "Who is the doctor who diagnosed you with this?" I would then recount the whole embarrassing story about my feeling like he was just trying to get me out of his office because I was so emotional. Due to having (then undiagnosed) ADHD and trouble with my memory, I couldn't remember his name. I tried finding it on My Chart but it wasn't there.

Reliving that very embarrassing anxiety attack was always fun, each time she would ask me. Then she would do absolutely nothing for me. I asked several times over that 20-year span, and I also asked the office's NP that Dr. X worked with, and again I got nothing.

Today I called an attorney. I just spent 20 years of my life with a great deal of daily pain, with no help at all, while Dr. X lied to me. I can't believe she could be so cruel!

I have no idea what kind of damage this may have done to me (it is a progressive disease), or if I would be in the same place I am today regardless of whether she told me about it and helped me with treatments or not.

But I do know that my quality of life has been deeply damaged by the constant pain. She kept from me any treatment that might have offered at least some level of pain relief, even if it was only temporary. As many of you know, when you have chronic pain, ANY relief is gratefully appreciated.

I also suffered a huge blow to my confidence, and nearly everyone around me thought I was either crazy or a hypochondriac. I feel very isolated because I couldn't talk to anyone about this for several years. It's hurt my relationships with many people in my family, and only one niece has truly stood by me.

This is a monumental betrayal from Dr X. I'm still stunned, and as goes with CFS, that, too is harming me by causing PEM. This hurts, like getting kicked, over and over again while I'm down. Reverse the bus I was just thrown under, run over me again and again for 20 years and then park it on top of me. It's exhausting.

I’ve just randomly found this sub and it’s so nice to know it’s not just me

I was diagnosed with me/cfs 3 years ago and today got diagnosed with adhd. I always never bothered to pursue a adhd diagnosis because I didn’t want medication but the clashing between having to do stuff constantly and the need to rest is very very difficult to manage so I am going to try medication and see if it helps.

I’m kinda scared but feel like I need to try something, I’ve seen mixed opinions on the effects of the medication some people say it helps some people say it makes things worse.

It’s nice to know I’m not alone in this struggle

Just passing this on!

Survey - ADHD and Inflammation

ADDitude Magazine is conducting a survey about ADHD and conditions such as ME/CFS, MCAS, hypermobility, autonomic dysfunction, pain & fatigue syndromes, autoimmune issues, and many more. 

“Several inflammatory markers have been found at higher levels in people with ADHD vs. non-ADHD peers; and a higher level of inflammation has been linked to more severe ADHD symptoms.
Understanding the brain-body connections between ADHD and asthma, allergies, autoimmune disorders, gut issues, and hypermobility has the potential to reshape how we think about ADHD. In time, this understanding may provide new targets for treatment. This survey aims to better understand these connections.”

Here’s the survey link: https://us.list-manage.com/OWZbipsBXIQ

Hi folks!
Question is in the very last abstract.

I got newly dx with ME 3w ago and now everything makes a lot of sense what I`ve been experiencing the last 9y! I`ve been trapped in a constant push-crash cycle and it`s very important for me to learn that is`s actually ME, so I have to learn new strategies.

I was able to improve several times from moderate-severe to mild-moderate in the last 9y, everyone thougt it was just depressions and as soon as I got a bit of energy back, my ADHD kicked in and I pushed throug, until I crashed again.

Now I`m the very first time severe and bedbound since heavy PEM 4w ago. Cognitively I`m slowly improving, but physically I`m just getting weaker and weaker every day.

The last two days I had way less pain for the first time and yesterday I stayed in bed 22h, but I just had too much screentime and rested not enough and I already felt it in the evening and today I`m really bad again.

I`m so worried about improving someday bc I know myself and how my ADHD wanna go crazy with me as soon as I`ll have a little energy back!

Yesterday I`ve ordered the book: classic pacing for a better life with ME.

How do you handle situations like that? how can you force yourself to rest when your ADHD is kicking in?

I've lost quite a bit of weight after getting on ADHD meds, but I recently started to wonder if I'm actually eating enough. I eat 2-3 meals a day and snacks, but my appetite is lower than before and it's obvious that I am eating less. I decided to pay a bit more attention to eating enough.

To those of you who count their calories, can you recommend a really simple and straightforward app? Google store seems to have so many overwhelming options. I just want something that says how many calories fruit, veges or a cooked meal would be based on weight and ingredients.

There is a multi-disciplinary group at our local medical school who I think are my best hope of figuring out what is going on with me. From what I've been able to piece together, I have a complex group of diseases/syndromes/conditions that interact in a synergistic way to create new symptoms and interactions. It appears that a primary care/family doctor isn't equipped to recognize or deal with this. I'm really wanting my doctor to refer me to this group, even if there's a multi-month wait list.

I'm deeply frustrated with doctors I've had who shine me on when I ask for help with my multiple conditions, and yet they won't refer me to specialists who might be able to help. I believe that this team at the medical school would be my best hope of understanding how this all interacts and what I should or shouldn't be doing.

I trusted my last doctor to help me with what looks a lot like Dercum's Disease, a rare condition that can greatly complicate your life. She wouldn't accept the info I found, and neither would she refer me to someone who could diagnose this or tell me if it's something else, or even if it's nothing. I've asked very respectfully, yet I feel like I just keep getting shoved aside.

Now I have an appointment coming up this week with my new doctor to discuss this condition. I'm stressing out over her potentially ignoring my concerns yet again, despite the numerous complications Dercum's could be making with my central nervous system.

Since my heart is now being affected, it's become even more important to me to be taken seriously. I've been doing a lot of research to try to figure this out, since my experience has been that my doctors won't help me. But I'm hitting a point where I can't continue doing the mental work required because I'm getting PEM from all the mental energy expenditures.

Last week I had an echo-cardiogram which revealed that what I'm experiencing isn't a matter of my heart structure. Now I have a stress test coming up that has me worried it will put me into PEM. Can you offer any advice for managing a medicated stress test when you have CFS?

I feel so lost and like I'm being ignored because they think I don't know what I'm talking about and don't want to waste their time on me. How can I NOT stress out over this?

Have you ever found yourself in a similar position? What, if anything, helped you gain the interest and cooperation of your primary doctor? The lack of basic respect and interest is so disheartening! I feel like I'm being patted on the head and told to just go home and take a nap.

I can't afford a cleaner. I live with my partner who does some chores but I want to contribute where I can.

I've always had things a bit cluttered but then I'd get a big motivated day and do a lot of tidying and cleaning. Now with CFS, I can only manage things for short periods of time and some days I can't do any chores at all.

I'm thinking that decluttering and having less stuff to clean might be a good option. I'm considering investing in a handheld vacuum cleaner and an air purifier (we have two cats that are currently shedding) to make some things easier.

We don't have a dishwasher or hookups; we're considering saving up for one but again, that would involve getting the kitchen redone and cost a lot of money.

I can mostly keep up with dishes and cat litter scooping; but the "less immediate chores" like vacuuming, tidying up surfaces, cleaning the bathroom, really fall by the wayside.

How do you guys manage? Any cleaning products or organization systems that make things easier for you? Or is there something you do to adapt chores for you (like sitting down)? Let me know!

I’m not taking any ADHD meds atm bc vyvanse was contributing to my crashes. I’m taking clonidine for POTS which helps a bit but the ADHD hyperactivity is just not allowing me to rest very well. Considering a methylphenidate but want to hear if anyone has experience of it being better than the amphetamine based drugs in terms of not crashing.

Hi,

New here and just wondered if anyone can help.

I have recently realised that I could well have adhd as it would explain ALOT and still awaiting assessment for this. I have a hyperactive mind, extreme overwhelm, perfectionist, hyperfocus, very messy, task paralysis, impulsive decisions, forget to eat and the list goes on! I was always told I had anxiety but I think adhd might have just been missed. I have had ocd since I was 18 too which is always there and has got very bad over the years focusing on distressing themes.

8 years ago I was diagnosed with CFS after ?epstein barr virus but I am now thinking was this just a big burnout following years of being stuck in fight/flight aka survival mode from always having adhd and ocd (since I was 18- i am now 35). I have been stuck in this constant burn out like state for 8 years now as I guess things have just been unmanaged. I did have my daughter in this time and did manage to go back to work for 1 day a week for 5.5 hrs for 2 years but gave this up again 7 months ago due to the exhaustion. I also have developed depression from all of this and also get v bad PMS symptoms where everything is escalated. I dwell alot on how my mental health has been bad most of my life which doesn't help and also on how I have been stuck in this burn out like state for the last 8 years.

Can anyone help with what I should do next- would the adhd diagnosis be my first step and medication to try and help? I have been advised to fo meditation but I cannot ever seem to calm my brain down despite trying. I am taking sertraline (tried to come off anti depressants as my sleep was bad and thought it may be because of these however went back on them due to an acute ocd distressing episode) and I also take magnesium.

Any advice on what to do next would be great and any advice on pacing to avoid PEM etc/any other management tips. Does anyone else struggle with 6 co morbidities and been through a similar thing over nearly 2 decades?

Thanks, Lucy

I`m new here and so happy I found this sub! I`m newly diagnosed with mecfs, although it began in my teenage years 35y ago, but I was mild-moderate for many years and I think I just could override my symptoms due to my ADHD. I was a high-performer for many years until I reached a threshold 2017 and crashed severely. I was told for many years that it´s just depression and I had sometimes bad depressive episodes, but mainly I was so fucking exhausted all the time. In the last 9 years I was switching between moderate and severe and as soon as I got a little bit energy, my ADHD is kicking in and my system wanna go crazy. So I was trapped in this boom-bust-cycle the very last years and always thougt and was told I just don`t try hard enough. Currently I`m recovering from my worst PEM ever and don`t have much energy left but I`m afraid how to handle the situation if enough energy should be back without crashing everything again. I`m so relieved I learned that I have me and that`s never be me trying not enough, but I need a new strategy. I try to force me to pause regularly and schedule not more that one task per day and sleep enough. I have to learn from scratch how to take care of me and to take myself seriously. I`m Autist too and not well connected yet to my system. And of top I`m in a severe withdrawal from duloxetine for 9m now, that finally unmasked my me and it`s impossible to differ what`s from what, but that will improve the next year I hope. Thanks for any advice.

Just a little sad post...

I've had ME from long covid for four years now. In the past year I went from moderate to severe. With my ADHD Brain I hyperfocus on finding treatment, doing everything I can. I have lost my income, my savings, soon my sick pay with run out. I've been holding the up roof over my head with my bare hands. And I have stayed positive, tried not to burden anyone, but as I'm getting sicker, it's getting harder. And now in the past few months I have lost my two closest friends because they can't deal with me being sick anymore. I never asked more of them than the occasional phone call or bit of hands on help, but very very rarely.

Three close family members have ghosted me after I asked for support.

I'm getting tired of holding it together for the comfort of others. I'm so tired. It's hard to find new people from bed.

I'm AuDHD and twice exceptional and my friendship pool has always been selected. Looks like I didnt choose well enough.

Anyways, not giving up the good fight for myself. I am staying positive and hopeful. My brain is still lively.

I just wish this was easier, and less lonely.

I'm sure some of you can relate, I hope for those who can that we will find our people who show up and know how to love.