Anyone else have ADHD to go with CFS and LC?

[Marcel G]

I've had gradual onset CFS for about 4 years, although looking back on the years before that I was struggling with fatigue for quite a few years before that, I just kept pushing through it, especially with exercise, thinking it was depression. Then LC for about 2 years. (peripheral neuropathy, muscle twitching, brain fog, and POTS) Just diagnosed with ADHD last week at age 53. So I've been on Concerta 36mg for 3 days now.

It's messed up daily recovery routine, but I haven't felt like I've overdone it yet. But I guess it's early days still. So far the main things are remembering to eat, as I've had a blood sugar crash a couple of times, and getting sleep. My psychiatrist suggested taking the concerta an hour earlier in the morning, and I'm also Thinking about adding L-Theanine before bed. (I already take melatonin, glycine, mag-glycinate, and 5-htp before bed.)

I'm hoping once get my routine back (a short walk, sunshine if the sun's out, yoga nidra naps, breathing exercises, meditation, hot and cold water plunges) , that the meds help by reducing some mental load by making the little mundane tasks that were painful to get done easier than before. (like ordering groceries, paying bills, scanning medical receipts for insurance, etc.)

As well, I'm hoping that now that I know I have ADHD I won't beat myself up all the time for ADHD things like procrastinating and forgetting things. I didn't realize before now how tiring ADHD is when you don't know you have it and why you can't ever get your shit together.

Overall though, I'm relieved to get the diagnosis. I'm a little worried about how the meds will affect the POTS, but my POTS wasn't severe, so I guess I have a little wiggle room.

 

[Katherine Autry]

I've had gradual onset CFS for about 4 years, although looking back on the years before that I was struggling with fatigue for quite a few years before that, I just kept pushing through it, especially with exercise, thinking it was depression. Then LC for about 2 years. (peripheral neuropathy, muscle twitching, brain fog, and POTS) Just diagnosed with ADHD last week at age 53. So I've been on Concerta 36mg for 3 days now.

It's messed up daily recovery routine, but I haven't felt like I've overdone it yet. But I guess it's early days still. So far the main things are remembering to eat, as I've had a blood sugar crash a couple of times, and getting sleep. My psychiatrist suggested taking the concerta an hour earlier in the morning, and I'm also Thinking about adding L-Theanine before bed. (I already take melatonin, glycine, mag-glycinate, and 5-htp before bed.)

I'm hoping once get my routine back (a short walk, sunshine if the sun's out, yoga nidra naps, breathing exercises, meditation, hot and cold water plunges) , that the meds help by reducing some mental load by making the little mundane tasks that were painful to get done easier than before. (like ordering groceries, paying bills, scanning medical receipts for insurance, etc.)

As well, I'm hoping that now that I know I have ADHD I won't beat myself up all the time for ADHD things like procrastinating and forgetting things. I didn't realize before now how tiring ADHD is when you don't know you have it and why you can't ever get your shit together.

Overall though, I'm relieved to get the diagnosis. I'm a little worried about how the meds will affect the POTS, but my POTS wasn't severe, so I guess I have a little wiggle room.

Hi Marcel, I also was diagnosed with ADHD late in life, after CFS diagnosis and several others. When I was young, I was blessed with powerful ability to focus and almost a photographic memory. It's all gone, now! Or at least in hiding.

I sympathize with everything you are going through. I feel wired with the ADHD meds - my muscles tense up, causing more pain, and anxiety too....so I try to keep the dose very low and use a little extra when I need to drive across town, work on mental tasks, and so on. It does give enough focus to get the bills paid compare insurance policies, make a grocery list, etc.

I use the same sleep aids that you do, plus Valerian and a Gaia herbal ("Calm"). I don't use melatonin every night. In fact, I don't use melatonin for more than 7 days in a row. Then I switch to one of the other options. This is because I don't want my body to stop making its own melatonin. So I alternate the sleep aids. Valerian is very nice, and Glycine. Magnesium can be taken every night. Haven't tried 5-HTP.

It sounds like you are ahead of me on the meditation and yoga nidra and the other parts of your routine! I'm impressed.

I'm starting some vagus nerve exercises - which include breathing exercises and other simple things that stimulate the vagus nerve - tickling the throat to cause a gag reflex, gargling, singing/chanting, yawning, etc. Recommend the book "Activate your Vagus Nerve" by Dr. Navaz Habib. It's paperback and not expensive. To me, it is clear that the vagus nerve is stuck in fight or flight. It may not be the only cause of our illness, but to heal, that has to be fixed.

Also looking into near infrared light therapy and sauna as potentially healing modalities. I am willing to try most anything. I think the anticholinergic theory is intriguing. Seems to fit.

Hang in there. You are doing so many things right!

 

[Marcel G]

Hi Marcel, I also was diagnosed with ADHD late in life, after CFS diagnosis and several others. When I was young, I was blessed with powerful ability to focus and almost a photographic memory. It's all gone, now! Or at least in hiding.

I sympathize with everything you are going through. I feel wired with the ADHD meds - my muscles tense up, causing more pain, and anxiety too....so I try to keep the dose very low and use a little extra when I need to drive across town, work on mental tasks, and so on. It does give enough focus to get the bills paid compare insurance policies, make a grocery list, etc.

I use the same sleep aids that you do, plus Valerian and a Gaia herbal ("Calm"). I don't use melatonin every night. In fact, I don't use melatonin for more than 7 days in a row. Then I switch to one of the other options. This is because I don't want my body to stop making its own melatonin. So I alternate the sleep aids. Valerian is very nice, and Glycine. Magnesium can be taken every night. Haven't tried 5-HTP.

It sounds like you are ahead of me on the meditation and yoga nidra and the other parts of your routine! I'm impressed.

I'm starting some vagus nerve exercises - which include breathing exercises and other simple things that stimulate the vagus nerve - tickling the throat to cause a gag reflex, gargling, singing/chanting, yawning, etc. Recommend the book "Activate your Vagus Nerve" by Dr. Navaz Habib. It's paperback and not expensive. To me, it is clear that the vagus nerve is stuck in fight or flight. It may not be the only cause of our illness, but to heal, that has to be fixed.

Also looking into near infrared light therapy and sauna as potentially healing modalities. I am willing to try most anything. I think the anticholinergic theory is intriguing. Seems to fit.

Hang in there. You are doing so many things right!

Hi Katherine, thanks for your reply.
I will have to look into the anticholinergic theory as well. I started taking choline a few weeks ago, just because I had some (but couldn't remember why I'd bought it) and I'd read an article on here about ADHD meds and micronutrients making a difference for some CFS patients.
I've been thinking about how I was gradually feeling more and more burned out for years before I started having CFS symptoms, and having undiagnosed ADHD, and how that combination might indicate that I might have a chronic issue in the dopamine pathway. I'm hoping to do a neurotransmitter test soon, but I'm in Indonesia right now, so I have to wait for the kit to arrive from Australia, and then send it back there for results.
Although CFS and LC patients both have low serotonin and 5-htp increases it, I'd check with your doctor before starting 5-htp, because high serotonin is dangerous. I'm currently considering lowering my dosage but will check with my doctor first.
and yes, hang in there too!
It often doesn't feel like I'm getting it right, because progress is so slow. I just try to remember that it's actually not that long since my last covid infection, and progress isn't a straight line.
The main thing I struggle with now is fear of another covid infection. I've had 6 in the last year, and with the exception of the 2 times I got paxlovid, they've all made my condition worse. I now wear my mask around the house just in case my wife or kids bring it home from work and school, but that makes me feel a bit paranoid/crazy.
again, thanks for your message. cheers, marcel

 

[Katherine Autry]

Hi Marcel, there are treatments and protocols for COVID. I have no idea what is available to you where you are, but here is a link with multiple options. I would be freaked out too if I had COVID 6 times!!! These protocols have been very successfully used in my city. You might want to check out this link just for the information: https://americasfrontlinedoctors.org/medical/covid

Also NAC - N-acetylcholine - is a good thing to take routinely. It's the precursor to glutathione, so it helps with energy production. And it also helps prevent infections, I think.

I think you are making great progress, you are ahead of me on several fronts and I've been at this for 20 years! Here is an article I recently found - it's a study on CFS by the NIH that has been published in one of the Nature Journals (prestigous). https://www.npr.org/sections/health...ome-emerge-from-major-st?ft=nprml&f=191676894

I'll bet Cort already has this information on this site......

 

[marcy m.]

I also suffer from ADHD and fibromyalgia since 2001. I also have severe neck, upper back & low back diagnosis's caused by a severe car accident in 2000 and a birth defect where I'm missing the maximus gluteus muscle in left buttock area. It causes leg length difference, hip misalignment, severe constant pain, foot problems, etc. I finally found a local dr. who treats neuro-immune disorders like long COVID, CFS/FMS, POTS, etc. I had my 1st appt. 4/30/24 and she spent 3 hrs. w/me. I was so impressed. The reason I'm posting this is I was recently notified by my pharmacy that they no longer can get my prescription for methylphenidate 10mg. (1 2xday) any longer or any other ADHD med in this category. I've tried all my local pharmacies by me, with no luck. They all either refused to talk to me in person, said they have on back order also and are not accepting new patients. According to on-line searches no one seems to know how long this shortage of ADHD medicines will last could be months or years. I'm so frustrated that when I finally get some helpful treatments from medications that help me function i.e. methylphenidate or similar med, depression meds & tramadol for pain, plus rec'vd 2 1/2 mo.'s PT where they did dry needling (helped a great deal). But then the Medicare insurance to cover PT ran out and no longer have PT access even though it was extremely helpful and need 3 surgies that will also require PT afterwards. Probably will have to wait to get those done till next year as they won't pay for more than 18 sessions in a year. I really just want to ask the community what everyone else is doing that take these ADHD medications that are no longer available? And/or any suggestions on finding pharmacies that can still refill them? Thank You All for listening.

Marcy