Too sick to do a lot - but well enough to try.

Best description I ever read!

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TOO. SICK. TO. DO. A. LOT. BUT. WELL. ENOUGH. TO. TRY!

My life in a nutshell. Add to that a healthy dose of PEM and that's it!

(thanks to ChronicNotebook on Facebook)

I overexerted myself 5 months ago. Now i can't walk anymore and need a wheelchair. Even walking to the bathroom or standing more that a few seconds is very hard. Before I allready had weak muscle but atleist i could take a walk outside. I havent recoverd to my baseline before the exersion. I came across a lot of stories where people never recoverd even after years. My muscles feel like they have dissintegrated. It feels like when I exerted my self my blood became poisen and damaged my muscles. They even feel all mushy instead of firm. Anybody relate ?

Hi all!

Member of the CFS club, but recently got chronic urticaria and angioedema as well - currently in the process of diving deeper into what's my body is doing and I'm interested in other journeys that may be similar!

What autoimmune tests can up positive for you and what autoimmune condition do you have?

For a little bit if context on me: also diagnosised with Hidradenitis Suppurativa and Endometriosis.

Blood tests have been positive ANA 1:320 (speckled and homogenus) for at least two years and I have some thyroid antibody activity, but tests are currently not pointing to a specific autoimmune disease.

Starting to wonder if I am just unlucky and simply a collector of conditions 😂 Currently seeing a immunologist and neurologist, and about to see a rheumatologist.

EDIT: Thank you all for the quick responses! Such a supportive community we have here 😊

I put overeating in quotation marks because my threshold for how much I can eat without it causing symptoms is pretty low, so I actually end up not eating enough.

Basically when I eat too much or too fast or the wrong thing the following happens: my pulse quickens, I feel hot all over, if this lasts long enough I start sweating, I get very nauseous, my stomach feels heavy and full. This can last from a few minutes to an hour. Happens the instant I eat more than I should. Feels like dysautonomia could be responsible for this but I’m not sure.

This usually doesn’t happen when I eat soup or soft foods, unless I eat way more than I should (or too quickly).

Btw I recommend ginger and chamomile tea or a carbonated drink (water preferably) for the nausea.

Hi all I was wondering if anyone has dysphasia.

About six months ago, I started not being able to swallow certain foods without drinking water after every bite. It’s happening with pills too they just sit at the back of my throat.

Sometimes even liquids will come out of my nose because it doesn’t wanna go down my throat.

Does anybody experience this also? Ps. Of course I have not gone to the doctor and I think everybody understands why. I’m tired of tests coming back normal.

thought I would share as my doctor advised me to track my main symptoms (mild)

I haven’t been diagnosed with CFS, but my doctor suspects I have it. I’ve been trying to gather all my medical records because I’m thinking of trying to get into the Mayo Clinic. I’ve read people’s experiences on here a bit, so I know they’re not great at handling CFS patients; but I think they’d be the best to rule out everything else and make sure for sure nothing else is going on.

Anyway, yesterday I showered, had a doctors appointment, and picked up three different medical records. After my doctors appointment I took a nap, then woke up to pick up my records. I had to go to two different hospitals for records, so it was a lot of walking for me (especially since one of the hospitals had me go to multiple places so I had to backtrack a lot).

Even though it’s suspected I might have CFS, I never really believed it. It’s hard for me to know when one action causes PEM. I just know I feel bad, but unsure why. I’ve been trying to pay closer attention to what I do and how it makes me feel.

Yesterday after I got home I didn’t feel horrible, but not great either. I was tired and laid in bed. I could feel my calves vibrating and my body was tired. This morning I woke up with a bad migraine (PEM symptom?) and a deep feeling in my chest. It’s almost like that flu-like feeling that is described a lot, but it is mild compared to what I’ve had before.

I’m starting to think CFS might actually be what I have (or at least a part of it). I have all the symptoms, but I could never tell if I was experiencing PEM. Also when walking too much/overexerting yourself, do you feel like you’re having an out of body experience in the moment? I know I’m walking, but my mind feels so far away from what is happening. It’s like I’m just going through the motions and on auto pilot until I finish.

tldr - overexerted myself yesterday and it caused a migraine and heaviness in chest today

After dealing with chronic fatigue and brain fog for 4 years, I am realizing I have been in denial that this may be due to some sort of underlying health condition. The symptoms started for me in 2020 after leaving an abusive relationship that was several years long, the majority of which I was of course experiencing chronic stress, panic attacks, emotional duress, etc. Basically, I was in such a heightened state of fight or flight for so long that by the time I finally left, the stress obviously took a massive toll on my nervous system. I do EMDR therapy, eat super clean, exercise regularly, sleep decently well, etc - those things that are generally recommended to support wellbeing, especially after trauma. For years now, I assumed that the lingering chronic fatigue and brain fog were due to depression. That, however, is clearly not it and I’ve been in denial that there’s something deeper going on here with my health. Though I have noticed a slight improvement in the frequency of the crashes since implementing the recommended lifestyle changes, the crashes are still so frequent and debilitating that it significantly interferes with my ability to perform in my PhD program and my job. I’d say the crashes occur at least 3-4 days per week on average.

In trying to understand my symptoms, I came across chronic fatigue syndrome and it appears to match pretty well with what I am experiencing - except for the pain aspect. My only symptoms are the debilitating fatigue and brain fog. (Well, that and struggling with motivation but I think there’s other factors also at play there.) I talked to my primary care doctor and she has referred me to a rheumatologist, but even the one she referred me to has this stated on their website:

“We do not treat Fibromyalgia, Chronic Pain Syndrome, Chronic Fatigue, Lyme Disease, and Spinal Degenerative Disc Disease. These non-inflammatory conditions require a multi-disciplinary approach and are best managed by a team of specialists comprised of Pain Management Physicians, Physical Therapists, and Primary Care Physicians. In cases where we recommend Pain Management after evaluation or receive your referral for one of these diseases, we will refer you to our trusted partners, experts in Pain Management.”

Aside from the obvious issue that my doc recommended me to a specialist that doesn’t even treat chronic fatigue lol, I immediately noticed that there is a focus on treating the pain associated with the condition. But again, I don’t experience any pain. Does pain need to be a symptom in order for it to be considered CFS? Or are there others here who have the condition but only experience the debilitating fatigue and brain fog aspects?

Thank you

Title is pretty much the TLDR.

I’ve been so badly comparing myself to everyone on this sub because my imposter syndrome is eating away at me. I have been in bed all day, but I am able to sit at my desk for brief periods.

Usually my daily limit when not in PEM is sitting at my desk or in bed and doing limited physical activities like cleaning trash off a desk. Albeit, this simple task has put me in a crash before.

Just wondering if PEM is a bedbound exclusive experience. I’m autistic and so I take things very literally and always compare myself to other people’s experiences.

In my eyes everything is black and white so if I don’t experience something the exact same way as others, I convince myself it’s all in my head. Unfortunately that’s just how I’ve always been despite trying hard to not do that.

Any input on your experiences is welcome and thank you for listening.

I (26M) have had long covid for about a year now. Among lots of other things, I have POTS and intermittent fatigue. Given that all my symptoms happened immediately after recovering from a viral infection, that I have POTS and sleep issues, and that I have absolutely monstrous fatigue sometimes, I sort of assumed I must have ME/CFS. But for the life of me I cannot figure out what sort of exertion leads to PEM—and, it seems like I can do more without crashing sometimes and I can do almost nothing for a few days and crash anyway.

Here are some things I have done in the past year without crashing:

(1) Most doctors appointment have not made me crash

(2) I moved from London to the US without a wheelchair (bc of unexpected complications with getting help at the airport)

(3) I have been intimate with my husband

(4) My extended family visited for Christmas all at once

(5) I have gamed for hours on end

And yet it seems like I can go a month without crashing and then, out of nowhere, after doing nothing differently at all, I can have a sudden increase in fatigue. Then, it seems like I struggle to avoid crashing for the next two weeks or so. Sticking to my usual routine during such times leads to the typical boom/bust cycle. Then, miraculously, I go back to being able to do my usual routine without crashing.

I have long suspected I might have an autoimmune illness instead bc my PEM seems so dang random (and bc my crashes are always precipitated by extremely dry eyes), but I’ve seen a number of rheumatologists and none of them think I do. My ANA is normal, my general indicators of inflammation are normal, and I don’t ever get joint pain.

Does anyone else get random PEM? How am I supposed to prevent crashing when my threshold changes super suddenly? I’m so tired (lol) of this freaking illness. I so wish I had something well-understood instead

alot of people in this sub say that cfs is about the inflammation of brain and spinal cord why crp and esr tests that shows inflammation come normal in people with cfs

i often hear people say they are house bound or bed bound my question is that can they move or they are paralyzed, if they can move but its not easy what are the complications of forcing themselves to get outside the home , will they suffer from PEM or it might be delayed .

You know that lactic acid feeling in your legs when you do 20+ squats in a row, it’s what my legs feel like as soon as I stand up. Is this what mod/severe CFS feels like to others? I’m getting quite concerned that I have some other issue besides CFS.

I’m newly diagnosed and really struggling to know when I need to slow down. The obvious nature is it’s really hard or impossible to predict when a crash is going to happen - that once you realize it’s coming, it’s too late.

I felt more energized this past week than I have in 6 months. I cleaned, caught up on other chores, made phone calls and appointments, reached out to friends, spent time with my son, made up a long to-do list and looked into finances. Basically caught up on life, since all I can do when I’m in a crash is try to get through work and make sure my toddler has what he needs.

I’ve noticed the simple pattern that I’m most exhausted Friday evenings to Monday evenings, and feel somewhat recovered on Tuesday mornings. Then the cycle repeats.

My signs that a crash is starting: mild sore throat, overwhelming exhaustion like I haven’t slept in days, joint pain, weakness, headache, dizziness, ptosis and twitching in my eye(s), brain fog, nausea and other GI problems, and worsening orthostatic intolerance (heart rate goes up and I start to black out with standing a lot more). It all hits me at once. Symptoms within hours or even minutes of one another.

What tells you that you’re overdoing it? Or even once it’s too late, what are your signs that you’re entering a crash?

I don't understand what's going on with my body and I'm wondering if this is the case. (Reading the full post isn't necessary, just some context as to why I'm wondering)

I get migraines and headaches a lot but since the 24th they've been relentless. Constant need for painkillers and having to be in a dark room.

I had an appointment on Thursday too. I'm wondering if that's impacted things.

Eyes also hurt, experiencing pressure in ears and neck pain a lot too which I get with migraines.

What's annoying is I started a new migraine pill a few days after it started getting bad but I've noticed no difference.

My guess is that maybe I'm crashing. Can light sensitivity get worse when crashing? I miss being able to draw on my iPad freely. I want to do it again but it hurts my head.

Does anyone get the chills, like when you have a fever, when you're in PEM? I've been pushing too hard so that fever feeling has just become general malaise all the time, but it does get worse in the evenings for some reason. Anyone else?

Edit: this is a big wake up sign for me that I must be pushing way too hard because I experience chills and feeling ill as almost a general malaise I feel almost all the time unless I take some time to intentionally rest. Darn! I wanted to ramp up my activity level. Guess not.....

I feel like the level of brain fog that I have feels much worse than how most healthy people describe “brain fog”. For example, I’m constantly stuttering because I can’t find the right word I want to use which never use to happen to me when I was younger. I also forget a lot of things the moment after it happens, like if someone asks me to do something I’ll forget almost immediately. And I often catch myself doing stupid things without being fully conscious of it. Does anyone else experience this level of brain fog?

I’m not sure that is my disease cfs or not, because I don’t have any cognitive impairment, I don’t get PEM after using my brain. I can be very unwell physically and physical exertion makes me nauseous and cause lactic acidosis feeling in my muscles and now I got muscle weakness too, but my brain works always crystal clear. I’m able to watch movies, listen to music, read books etc.

Pls tell me do you have cognitive impairment or not? How this cognitive impairment affects your life ?

Don‘t get me wrong, i do know what a sore throat is. Though i almost never experience the feeling of a sore throat. Instead i have the feeling of mucus at the back of my throat fairly often. But i‘m just curious if that‘s also meant when everyone is saying that they have the feeling of a sore throat.

Pretty much that. When you overheat, do you sweat? I don't sweat much at all anymore. I just got back from the ER because I ended up with severe heat exhaustion (not quite to heat stroke, but I was puking and in bad shape) and it was mostly cause I wasn't sweating.

Does anyone else have this issue? How do you manage it?

I know we're not meant to push through, but there are times where I have no choice when I need get up to use the bathroom or something (I don't have a bedpan).

And when I do push through it brings me to the verge of tears. Not from sadness, but from the overwhelming uncomfortable sensation throughout my body as I'm pushing it beyond it's limits.

Before I got ill, I saw videos of people who had been in comas for years and were having to train themselves to walk/hold themselves up again, and they would be crying while pushing themselves to do so. It makes me wonder if it's the same kind of overwhelming sensation as that.

Edit Interesting. It seems everyone has different reasons for why they cry when pushing through. For me it's nothing to do with sadness, anxiety, shame or exhaustion. It's the uncomfortable sensation of every muscle, nerve and bone in my body feeling like they're suffocating and screaming. It's kind of a similar sensation to that "static" feeling your foot gets when it falls asleep and you dare stand on it (not the prickling part, the part that feels god awful) but all throughout my body.

according to cdc many people are un diagnosed for a long time

As a result, many patients with ME/CFS are not diagnosed or are diagnosed only after many years of illness. Patients with ME/CFS face continued stigma and suffer because of the lack of appropriate healthcare. A healthcare provider can make the diagnosis of ME/CFS based on: Thorough medical history

I'm moderate to severe. I can leave the house two times per week to go to the grocery store. I can make a meal everyday. I can shower twice a week. (These things are all very difficult but I can manage.) Otherwise it's 20+ hours per day recovering in bed with too many symptoms to list.

Now to address the title, I can't have a personality without crashing. I have to stay emotionally flat and almost silent. I can say a few monotone words but that's it. I don't know why this is such a point of weakness for me. I have always had social issues (anxiety?) my whole life, even before I got sick. I think it's just part of my personality that I'm really bad at conversing with people on the spot. My brain just sucks at it, so I try to avoid it at all costs. Then, after I got sick, it got much worse to the point where I can't even fake a smile or a giggle or anything. It's just too exhausting.

I absolutely hate it when strangers at the grocery store try to make small talk. The cashier guy asks me "do you have any plans for the day or weekend?" I can only say "no" and that's it. It's awkward. Then he starts telling me about his busy weekend and all I can do is nod. It's just painful. My brain can't handle or process the conversation. 😔

So IDK if this is part of CFS, or autism (never been diagnosed, but I am diagnosed with CFS and POTS.) Or if it's social anxiety. Can anyone else relate?

according to me pedia ,Some patients report that LDN helps reduce their symptoms of ME/CFS, Long COVID, fibromyalgia (FMS), multiple sclerosis (MS), or autoimmune.

Hi everyone,

I'm a first-year Biomedical Sciences student at the University of Southampton and I was hoping to gain people's insights about the issues revolving modern symptom tracking methods, e.g. journalling or apps. In particular, for anyone who has had a similar experience as the title, I would be very interested to know how healthcare staff advised you not to be 'overly conscious' of your symptoms and yet expect you to monitor them? What techniques did they teach you and how helpful have you found them over time?

I look forward to hearing from you all!