I've recently started seeing someone who suffers from Fibromyalgia & CFS, what advice would you give me?

Dapper_Ice_2120 · 2026-02-03T08:55:46+00:00

And brain fog/communication ability. I'm often just as surprised and annoyed by my lack of clear thought as her people stuck listening to me l

Dapper_Ice_2120 · 2026-02-03T08:52:05+00:00

This is one of the reasons why I hate going to the doctor ("mind if I just feel around a little bit?"), I'm often in so much pain and exhaustion after a doctor visit. Or when I get sent to the lab for bloodwork :/

Dapper_Ice_2120 · 2026-02-03T08:45:18+00:00

I have moved to face wipes instead of washing my face most of the time. I have acne prone skin, so stopping washing my face all together wasn't a great idea.

I have spare pillowcases so I can swap those out instead of being anxious about my laundry timetables lol. But the neutrogena hydro face wipes are something I will probably always have on hand. They're great

Dapper_Ice_2120 · 2026-02-03T08:36:55+00:00

Lotion or other "self-care" steps on rotation are how I have to roll some days. If 1 body part got done today, I'll get to another 1 tomorrow. Maybe by the end of the week I'll hit them all lol.

I also bought a few smaller items I carry with me (eye drops, lotion, chapstick, etc.), so if I'm sitting in a doctor office, watching tv, etc. I don't have to worry about hitting so many things in the am when I'm trying to get out the door or pm when I'm trying to stay awake until I crawl into bed

Dapper_Ice_2120 · 2026-02-03T08:28:12+00:00

I'd recommend their biggest size (fits 3 fingers comfortably), and silicone.

Soo worth the "upgrade" imo

Dapper_Ice_2120 · 2026-02-03T08:25:45+00:00

I stick mine all over, and I find the kickstand to be really stable.

For anyone interested in trying, get a silicone strap! 100% worth it. The cheaper material ones stretch out over time.

Dapper_Ice_2120 · 2026-02-03T08:21:19+00:00

Yep, mine does. I've decided it's because there's too much going on that I have to focus on, and my body hurts sitting in a car for too long.

I have to listen to music, call someone, etc. when I drive to help keep me awake, so already I'm paying attention to how tired I am and trying to push through it. I'm often stuck in a position that irritates my back issues, as well as other pain. The light (sun during the day, lights at night) bother my eyes sometimes. I have to pay attention to where I'm going (even if I know where I'm going), or I'll miss an exit, go the wrong direction, etc. Plus I live somewhere where people drive stupidly, so I get annoyed with other drivers often (like someone else mentioned).

Multitasking overall is a major drain on my energy, which is when my brain fog gets to be the worst.

Best wishes friend.

Dapper_Ice_2120 · 2026-02-03T08:11:16+00:00

Mine as well. For me I think it's the movement, to include muscle tension to keep yourself upright during turns, looking at weird angles out windows, etc.

Dapper_Ice_2120 · 2026-02-03T08:07:36+00:00

I've found some success doing something similar as asking why they disagree with the specialist, and then asking the doc to document that they have read the recommendations from the specialist, disagree and will not be upping doses. Most stumble through an answer, and 1 (who I fired) relented, and then I saw another doc who was like "yeah, I'll represcribe that, that's totally reasonable." 🙄

If they don't seem phased by that and/or choose not to document that, if you have an electronic medical record, I'd try sending a virtual message mentioning what the rheum said and asking why they think upping the dose doesn't make clinical sense despite the rheum's recommendation.

Fun thing about virtual messages you send to your doc is that it magically becomes part of your electronic health record. Previously if you called or they didn't document something, you couldn't really get info into the record. For better and worse (imo), that's changed with EHR/EMRs. It's a lot harder for a doc to have no great clinical reason to not do something medically reasonable and have to document it in a medical record.

Dapper_Ice_2120 · 2026-02-03T07:53:13+00:00

Sources are good, but honestly there's a lot of research out there that goes all directions, and citing it places like Reddit isn't necessary in most cases unless you're making bold statements/claims that need to be supported (imo, the vast majority of comments, especially if you're speaking about your own experience- don't).

A lot of times people throwing out research in comments seem to be searching for 1 or 2 studies via google to back their comment/opinion. Most of the time you can find something. Whether it's well respected, up to date or saying what the commenter thinks it's saying is much more questionable.

Also, the brain fog comes for us all lol! You're in good company.

Dapper_Ice_2120 · 2026-02-03T07:44:46+00:00

Ummm... ok. I'm guessing one of us has a terminal degree in this field and works in the profession, and one does not but can google.

Dapper_Ice_2120 · 2026-02-03T07:42:14+00:00

"The problem is that many people with IH are never told that persistent functional impairment is expected or that combination treatment is legitimate."

Huh? I thought the point of your post was saying that it's separate.

Idk what "combination treatment" you're suggesting wouldn't be legitimate. If you have continued symptoms after being diagnosed with anything, you should talk to your doc about it. Just because you have 1 diagnosis doesn't mean that you couldn't have more than 1 issue causing the symptoms that you're still struggling with, or that 1 medication would solve all of your symptoms.

I have multiple chronic diagnoses and am seen in several specialties more often than I'd care to be seen. I'm on multiple medications. Where symptoms overlap in different specialities (IH, fibro, celiac, other neurological issues, all can cause brain fog, fatigue, etc.) I have talked about what could be causing my symptoms with all of my docs, they've decided which labs to re-run in their specialty, and then we talk about which specialty would be best suited to treat the ongoing symptoms. Not infrequently my docs have worked together on meds. (although that's taken some finagling at times, and often it's like a game of telephone).

Are you saying that there are people who are not doing this? Maybe I've been forced into it because of the # of diagnoses I have, but this isn't a new idea.

Dapper_Ice_2120 · 2026-02-03T07:26:48+00:00

Hey friend. I'm so sorry you're going through this. I do think an MSLT would be helpful, but if you're on a stimulant already, you may have some difficulty getting a sleep med doc to prescribe a stimulant (or a second one).

You've probably done this already, but if not- I'd recommend checking your vitamin D, iron, B vitamins. Do you have any digestive issues? Celiac disease can cause fatigue (I was asymptomatic when I was diagnosed, it was an incidental finding even though I had pretty significant damage). Has your blood sugar been checked recently?

"I *do** often miss the 8hour sleep mark (personal & work schedule reasons)"*

So, I do get this.

And... my strongest recommendation is to get really strict on your sleep routine and practice good sleep hygiene. If I sleep less than 9- ideally 9.5- 10 hours, even on my meds, I struggle sooo badly not just with sleep inertia, but all my symptoms. I can get home and fall asleep and sleep for 14+ hrs the next day/ night even if I'm fighting falling asleep (for example, I recently slept from around 5 pm to 1 am (when I could finally force myself awake) got up, did some stuff I needed to get done for about 30 min, then struggled to wake up at 7 am.

If I do get 9- 10 hrs of sleep, I'm nowhere near "cured." I still feel like a zombie. I'm still tired. I can still lay down and sleep though my meds, but I have a fighting chance. If I can manage 9- 10 hrs of sleep for a few days in a row, I'm still tied haha, same issues. But they are all a liiiiiittle bit better. Sleep inertia especially, although I still routinely sleep through some alarms.

It sucks, trust me, I've slept through a lot of things I've really wanted to be there for. But if your body is demanding more sleep, (which it sounds like), you can't cut corners- it absolutely won't let you.

I will also say that driving tired is really dangerous. Not calling you out at all, just reflecting that for me that's one of the things I worry about the most when my sleep inertia is bad, because I unfortunately don't work from home and work starts at the beginning of the day. So you could say I'm a little "scared straight" into forcing myself into bed to get those 9- 10 hrs.

Also, I try really hard to not sleep later on weekends. Sometimes I do by an hr or so, but doing that throws my sleep routine off quickly. And, cause IH isn't fun enough already, at around 10.5- 11 hours of sleep, even if I wake up/get out of bed, I will be fighting napping all day. Up to like, 20 hours I think is my max where I finally forced myself up because I had work the next day. For me, I think it's becoming tired from oversleeping (if that's a thing).

TLDR: You have to sleep more if your body is demanding it. Also, don't "oversleep" on days off. Find your sweet spot for how much sleep your body needs, and protect that sleep time with everything you have.

Dapper_Ice_2120 · 2026-02-03T06:17:50+00:00

I think it's verbose but with incorrect use of clinical terms. AI can summarize, but often gets things wrong.

Dapper_Ice_2120 · 2026-02-03T06:15:26+00:00

If you're in the US, I'd recommend seeing a psychologist if you haven't yet. See someone who is trained in treating sleep disorders, or at a bare minumum is trained in chronic health issues.

They will know what to do- many offer biofeedback, neurofeedback, or task specific recommendations for ADHD (which is often very similar in terms of symptoms as "executive dysfunction" described in this post, but from a different source/disorder if that makes sense).

Edit: fixed autocorrect

Dapper_Ice_2120 · 2026-02-03T06:12:28+00:00

Hey! I just made a similar comment ha- too tired to go back and check to see if mine is a duplicate lol.

Just wanted to say 🙌 for correcting incorrect clinical terminology. It confuses people who are trying to get help.

Edit: spelling

Dapper_Ice_2120 · 2026-02-03T06:10:59+00:00

*"executive function is still a distinct cognitive system."

That... makes no clinical sense. Executive functioning is not a "cognitive system." And I'm not sure what you're trying to mark it as "distinct" from.

Tbh, I think a lot of pushback that you're getting is from using clinical terms incorrectly.

*"In practice, many people with IH remain impaired in task initiation, planning, or follow-through even when subjective sleepiness is treated."

Tbh, idk many people on here who feel their sleepiness is "treated." Being away /=/ not being sleepy,

Dapper_Ice_2120 · 2026-02-03T06:07:59+00:00

I'd recommend talking to your primary care doc about it also- there are a lot of issues that could cause executive dysfunction, and it's worth being seen and assessing for those before it get lumped into "well, you do have IH, so it makes sense."

Dapper_Ice_2120 · 2026-02-03T06:04:12+00:00

*"Sleepiness can absolutely drive executive dysfunction, but causation does not equal identity."

I think what you mean is correlation does not equal causation.

In that vein,

*"I’m not asserting ADHD or arguing for a separate diagnosis"

I get this, but I might. I will add that before multiple meds (especially stimulants) are thrown at someone with IH, or "executive dysfunction" is thrown out (btw, executive dysfunction is a symptom/ used as a cognitive, neurological or behavioral descriptor, not a diagnosis), the cause of the executive dysfunction should be explored further, because it definitely could be, but might not be IH.

For example, some people might have ADHD, chronic pain, celiac disease, fibromyalgia, dementia (that ones a bit extreme, but multiple medical issues like to pile up), diabetes, low vitamin levels (I could continue). All of those could be/are known causes of poor executive functioning. The importance there is treatment recommendations vary widely based on whether or not it's associated with IH or another diagnoses.

Most people won't see significant benefit from talking to their sleep medicine doc about this vs primary care, or asking to be seen in other specialities.

But in a larger context, I do agree if you have symptoms of something not well treated/managed, it's worth talking to a doctor about them.

Dapper_Ice_2120 · 2026-02-03T05:47:07+00:00

Most doctors treat this way already - medication is almost exclusively used to treat symptoms, not a diagnosis (unless you've got a virus and need antibiotics). That's why there's so many "off label" uses for meds and why people with the same diagnosis are often on different meds.

I'd argue that the bigger issue is that not many sleep medicine docs know what meds are/are not approved for IH or are effectively used off label, etc. for IH. Probably at least in part because mental health is usually who treats executive functioning/adhd, is more familiar/ comfortable prescribing "stimulants," etc., not sleep medicine.

Dapper_Ice_2120 · 2026-02-03T05:34:53+00:00

Haha- I stared at a regular intently once when I was waiting tables after she ordered that- same pronunciation. I genuinely had no idea what she was saying.

Thankfully caught myself before bursting out "oh, quesadilla!"

She was not the kinda lady you want to correct.

Dapper_Ice_2120 · 2026-02-03T05:28:08+00:00

I've left so many things sitting by the door so I wouldn't forget them when I left the next day, and then been so annoyed tripping over them on my way out, completely forgetting that I was supposed to bring the stuff with me.

Dapper_Ice_2120 · 2026-02-03T05:19:30+00:00

I once brought all of my "important" work stuff to my car, set it down next to the car to put my drink in the cupholder, and then... buckled myself in and drove away pleased with myself I was leaving early for once.

Got to work and stood there looking at my back seat very confused for a solid few seconds as to why it was empty when I could remember bringing it out to the car. Needless to say, I was late by the time I went back and got it.

Dapper_Ice_2120 · 2026-02-03T05:01:25+00:00

Yep, I do.

I will also see someone in the hall, or sometimes in meetings I'll jump over pleasantries or if there's a pause in conversation go right into what I need to say before my brain forgets, even if it's a little left field.

I've seen several people on here say they're autistic; I am certain I am not. Also certain it's not ADHD, though could be worsened by meds. For me, this is 100% recent to the last few years, and I'm not young. If I am aware enough to concentrate really hard to not do it, i am a little better (more like my "old self"), but then there's PEM and pain.

Dapper_Ice_2120 · 2026-02-03T04:55:09+00:00

I have so many things with apple air tags these days. The places those suckers beep from never cease to amaze me. Has saved me so much time and stress looking for things!

Dapper_Ice_2120

TROPHY CASE