r/CFSplusADHD

My muscles are getting weaker, and idk if it's from the CFS or inactivity. idk if I count as moderate or severe. My diagnosis was in March and it's been a rollercoaster since then. I'm scared to push myself because I do get pem from doing things like leaving the house, but I'm worried that I'm exercising so little it's making it worse. Any advice/your experiences?

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!

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 :(

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.
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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