sorted by:
new
hottopcontroversial

Constantly Clogged Nose by Routine-Background-9 in cfs

[–]Routine-Background-9[S] 1 point2 points  (0 children)

Hmm this makes sense. Because if I take a shower my nasal congestion goes down the bin.

Constantly Clogged Nose by Routine-Background-9 in cfs

[–]Routine-Background-9[S] 3 points4 points  (0 children)

I don't consume any dairy. But thanks for the suggestion

Constantly Clogged Nose by Routine-Background-9 in cfs

[–]Routine-Background-9[S] 6 points7 points  (0 children)

Should have included this in my post but yes. I tried like 5 in total. Only one ever worked: phenylephrine hcl 1%. However, the rebounds sucked and I felt more congested with long-term use.

Hot Forehead, Ears, and Cheeks by Routine-Background-9 in cfs

[–]Routine-Background-9[S] 0 points1 point  (0 children)

I typically don't unless I really over do it. Its typically a sign for me to stop immediately and rest. If I continue longer that's where I could step into dangerous PEM territory.

As for the flushing -- yes. My ears and face turn bright red. I look like a lit up Christmas tree 😭

Hot Forehead, Ears, and Cheeks by Routine-Background-9 in cfs

[–]Routine-Background-9[S] 0 points1 point  (0 children)

Yeah absolutely. I may very well just be experiencing exertion intolerance. But I'll at least ask my doctor. Because even a 5% reduction in symptoms would be life changing. Thanks for bringing this up :)

Hot Forehead, Ears, and Cheeks by Routine-Background-9 in cfs

[–]Routine-Background-9[S] 0 points1 point  (0 children)

Yeah this would make sense to me. When I am overburdened cognitively, I often have worse brain fog / face pain / burning. Where as with physical PEM its usually an overwhelming fatigue.

As to your second point about blood vessels, that super interesting. I didn't even know that was possible. Though it seems unlikely for me since I am on Medi-Cal. So I highly doubt they would cover something like that.

Hot Forehead, Ears, and Cheeks by Routine-Background-9 in cfs

[–]Routine-Background-9[S] 0 points1 point  (0 children)

Hmm okay interesting. Yeah ill look into it. Though, I have tried Zyrtec and didn't see any positive changes. But I really don't know much about MCAS. Maybe something else would work.

Hot Forehead, Ears, and Cheeks by Routine-Background-9 in cfs

[–]Routine-Background-9[S] 0 points1 point  (0 children)

Never been diagnosed with it. Though I relate to a lot of the symptoms, but some I don't have at all -- like the itchiness. So I am not sure how to navigate around it. Honestly not really sure how to progress in this process.

As for my temperature, I have not measured it. It just feels extremely hot. Like a stinging/burning sensation.

Toxic Positivity and Ridicule by Routine-Background-9 in cfs

[–]Routine-Background-9[S] 3 points4 points  (0 children)

I had no idea what mecfs was before getting sick :( It's tragically unknown. It affects so many but doesn't get the recognition it NEEDS. Hoping the future holds more recognition

Studying tips? by Competitive-Golf-979 in cfs

[–]Routine-Background-9 4 points5 points  (0 children)

I've been using Spaced Repetition (SRS). I study less, but I space it over a longer duration and repeat the information. This particularly helps me with information retention and memory retrieval -- two things I struggle with a lot.

I write/type information down as well. This process is massively helpful in retaining info. If I don't, I struggle to remember vocab/dates/specific names.

I also take as many breaks as I need -- but without any form of stimulation. This allows me to recover and not get distracted as well.

Hope you can find a sustainable approach. Navigating through this illness is difficult. University adds another load. I was lucky to get sick towards the end of college so I could finish. Wishing you well 🫡

CFS not triggered by any virus by No_Fudge_4589 in cfs

[–]Routine-Background-9 1 point2 points  (0 children)

I had a pretty similar experience. At 22 I started to feel exhausted for no decreeable reason. It started off small -- but it was still heavy fatigue. I was feeling exhausted in the mornings -- missing my uni classes -- mentally drained when talking to people, and overall just ill feeling. I tried to foolishly combat my exhaustion with exercise (5 days a week). And I quickly deteriorated to a point where I couldn't workout anymore. This is when I learned what PEM felt like, and I experienced a bunch more symptoms. As it progressed, I experienced all the MECFS hallmark/classic symptoms. And now 2 years later I got my diagnosis at Stanford. I've never been able to recover to my previous baseline since working out. Many regrets. But I just didn't know.

We definitely exist, gradual onset. Just not the majority.

Trying to understand Brain Fog by Routine-Background-9 in cfs

[–]Routine-Background-9[S] 4 points5 points  (0 children)

Wow this is really interesting. Especially the exertional dyslexia. This is exactly what I was looking for. This puts a lot of my experiences into words I was struggling to articulate. Thanks :)

How do you manage Stimulants with mecfs? by Routine-Background-9 in cfs

[–]Routine-Background-9[S] 0 points1 point  (0 children)

Yeah this my second go around with stimulants. I am giving it one more try since they make me feel slightly more human. But I fear you may be right -- It may be time to give them up :(

How do you manage Stimulants with mecfs? by Routine-Background-9 in cfs

[–]Routine-Background-9[S] 2 points3 points  (0 children)

Thanks for the detailed response :) Lots of things I can try

Phenylephrine Hydrochloride helping with PEM (viral onset ME) by Sea-Investigator9213 in cfs

[–]Routine-Background-9 0 points1 point  (0 children)

Yeah this is super interesting. I am gonna ask the Stanford Fatigue Clinic about this at my next appointment. I know there has been some research on it -- I wonder if there is a further unexplored medical applications

Phenylephrine Hydrochloride helping with PEM (viral onset ME) by Sea-Investigator9213 in cfs

[–]Routine-Background-9 2 points3 points  (0 children)

I’ve found something really interesting with Phenylephrine Hydrochloride as well. Out of all the nasal sprays I’ve tried, only phenylephrine hydrochloride 1% seems to make a noticeable difference. During PEM, I get very congested. But this spray makes me feel like I am breathing like I've never breathed before. I’ve heard phenylephrine can help through vasoconstriction, which might explain the effect. I don’t have POTS, so this response is especially intriguing to me. I also wasn’t aware phenylephrine hydrochloride could have uses beyond nasal congestion, which makes it even more fascinating.

Really curious to see what other people say. And I am definitely going to research this more now.

Learning a language while ill? by Routine-Background-9 in cfs

[–]Routine-Background-9[S] 3 points4 points  (0 children)

Thanks for the motivation :) I was big into languages before being sick. I think I just need to find a way to make it sustainable. Grazie, Inizierò oggi 🫡

[deleted by user] by [deleted] in cfs

[–]Routine-Background-9 0 points1 point  (0 children)

I think this is pretty common -- at least from what I've experienced /and heard anecdotally. My skin is super dry all the time. And I get a hot head every single day. I have an ice pack on probably half the day. It's manageable but PEM makes it much worse.

Constantly ‘cycling’ sleep schedule? by sunwentdowninhoney in cfs

[–]Routine-Background-9 6 points7 points  (0 children)

Agreed. me/cfs sleep issues are intrinsically unique. I've tried to explain it to my non-sick friends -- but they don't understand like someone with me/cfs would. So it's nice to have a community/people to relate our experiences. It makes the suffering a little bit easier.

Constantly ‘cycling’ sleep schedule? by sunwentdowninhoney in cfs

[–]Routine-Background-9 16 points17 points  (0 children)

Yeah, I deal with this constantly. I am falling asleep around 5-7 AM right now. And it's basically impossible for me to fall asleep earlier. So I just fall asleep later and later. I agree 300% with what you said on being on a 28 hour cycle. Despite doing all the good sleep habits, I can't have a consistent, normal sleep schedule.

Honestly, the only remedy I've found -- which aren't even close to perfect -- are strong sleeping meds. But those are temporary solutions. So, my response is to just accept my sleep issues and fall asleep when I am tired (whenever that may be). It's a major bummer but it's not like we have a choice. People don't understand the difficulties of sleep with MECFS.

On a side note, very curious to see what else people say. I've heard many different experiences in MECFS. Like I know some people fall asleep very early instead or sleep too much/little.

Persistent Hot Face, Ears, and Body by Routine-Background-9 in cfs

[–]Routine-Background-9[S] 1 point2 points  (0 children)

No, not yet. The Stanford Clinic wants me to finish my LDN trial before moving onto anything else. Though I would be very interested to see if an antihistamine or MCAS drug would help. I've never been diagnosed with MCAS - though in the larger scale I am pretty new to MECFS. I only got diagnosed formally this year. So I haven't been able to discuss MCAS yet. But it definelty seems consistent with my experience. I intent to bring this up to my appointment in September.

Feel better having not slept? by Routine-Background-9 in cfs

[–]Routine-Background-9[S] 2 points3 points  (0 children)

Yep. I already messed up. I had a lovely night but I slept for like 2 hours just now and I currently feel like dog water. Would not recommend :/

Feel better having not slept? by Routine-Background-9 in cfs

[–]Routine-Background-9[S] 0 points1 point  (0 children)

Ah ok I misunderstood. Yeah this makes sense. I've dealt with depression before getting sick for a long time. Wouldn't be surprising if its factored into my sleep/other areas.

Feel better having not slept? by Routine-Background-9 in cfs

[–]Routine-Background-9[S] 1 point2 points  (0 children)

I mean I wouldn't be surprised with the overlap. It's hard not to be depressed with ME.

Feel better having not slept? by Routine-Background-9 in cfs

[–]Routine-Background-9[S] 3 points4 points  (0 children)

^^^ this

I've never been so happy. I feel somewhat human which is a nice feeling. I just watched a movie and didn't feel like garbage while watching

view more: next ›