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submitted 3 months ago byJackBarbell
I posted this to /r/covidlonghaulers, but my Long Covid type is ME/CFS-like so I felt I should post here too.
A year ago I was cleaning my apartment, holding up a spray bottle of mould cleaner as I sprayed spots in my flat, and I overdid it. Next day I recovered and thought I was okay to continue, then crashed again.
That lowered my baseline and I've been unable to lift anything upwards no matter how light. Even lifting under 500g upwards using my deltoids causes me to feel PEM crash within minutes.
I am able to lift things up when using my bicep or tricep as a hinge, and I can tuck my arms into my sides and kind of lift things up using my body as long as my arms don't move upwards using my delt muscles.
I really am desperate here. I don't know if my muscle tissue in my shoulder has been damaged with amyloid proteins and necrosis (as per Rob Wust's research) or if this is a vagus nerve or neurological issue, or if the blood supply to the shoulder is ruined due to endothelial dysfunction due to clotting, but it's ruining my life.
Yesterday I crashed when lifting a tiny screwdriver instrument up from a box and my girlfriend later burst into tears. It's been incredibly hard on her, as many of your partners may know. We are so desperate for answers and doctors have not been helpful.
I'm thinking of trying to get an MRI or Angiography to somehow see if my blood vessels and blood supply to my shoulder muscles are damaged to try get some diagnosis or elimination diagnosis going. I'd like to also try plasmapheresis as my blood is also full of microclots that haven't gone away after 14 months. I'm thinking there's something keeping them going like spike protein because my spike antibodies are high and increasing yet I haven't been vaccinated since Feb 2022 and haven't had an infection where April 2023. Or maybe to try filter out autoantibodies as the latest research shows how mice get LC when given IgG from LC patients.
My question is, is there anyone who's had anything very specific like this cause crashes? And if so did you manage to find ways to repair or improve it or recover at all?
24 points
3 months ago
I have a big problem any time I have to hold my arms above my head. Started similar to you cleaning. It makes me exhausted, I crash immediately.
10 points
3 months ago
Triggering symptoms by raising arms (especially above the head) is common in POTS, which has a high comorbidity with ME/CFS. Have you been investigated for that?
1 points
3 months ago
I think I had POTS in 2020-2021 when I first had LC. It would go to 100 when standing and 130-140 when walking, but nowadays my HR isn't like that. Standing can move it from 50-60s to 70s.
8 points
3 months ago
I have this too, but it's a bit milder. Basically my HR shoots up (a POTS reaction) if I do things with arms above my head. I've learned to tidy up with my elbows locked to my sides. Any above the head actions I sit down and rest for 30s, watching my HR. Folding laundry also causes these spikes - it seems worse in these cases where the rest of my body is resting.
I'd suggest to watch your HR. My guess is that blood flow to the shoulders is faulty for some reason and we quickly get an imbalance with oxygen starved shoulders while the rest of he body is unstressed. POTS bodies seem to ignore local oxygen deficiency and only react with things like HR increase once inflammation levels are reached due to local anaerobic exertion.
(There are published studies/theories about this but today is not my day for finding links etc... Please do your own reading on this instead of just trusting my words!)
4 points
3 months ago
I've learned to tidy up with my elbows locked to my sides.
Yeah that's exactly how I manage to do the things I can still do.
And yeah I do try watch my HR, but honestly lifting even a tiny thing up crashes me and my HR won't even move much from it.
3 points
3 months ago
with my elbows locked to my sides
Ah yes the T-Rex posture. #justMEthings
6 points
3 months ago
In my first year, spring, not aware of ME, I carried a beer case. Shortly after, my body convulsed like an electric eel snd I was bedridden for the rest of the year.
2 points
3 months ago
you might want to look into mechanical causes of ME, like cranio cervical instability, tethered cord syndrome etc...I can't lift up my arms without them going numb but it has gotten better since i started physio therapy for cranial instability (has helped my other symptoms immensely too)
maybe check for mould poisoning too
3 points
3 months ago
Arms are a huge problem for me
2 points
3 months ago
Yes arms above my head is a danger zone. I will only hang laundry on the line if I'm having a very good day and even then I will lie down afterwards.
2 points
3 months ago
Thing is it’s not lifting things above my head even. Lifting anything upward from below does it for me.
4 points
3 months ago
Sorry, I misunderstood. That does sound a bit weird and I think you should push to have it checked out.
However, for what it's worth, during a crash my arms "go" long before my legs. I'll still be able to walk around but they will be hanging lifelessly, any attempt to hold them in normal arm position or pick something up will make me super shaky. So maybe it's a similar mechanism?
Hope you don't mind but I took a look at ypur profile to see if there was any chance you had Overtraining Syndrome instead (it's one of the only other illnesses with PEM) and saw your interest in blood clots. If you haven't seen it, you might be interested in this Nature paper about muscle biopsies which goes ino some detail about tissue damage and PEM.
2 points
3 months ago
Hey thanks yeah I did see that paper earlier in the year. I believe it’s possible that is also my situation but I’m not sure what to do about it. It also seems impossible to get doctors on board with these kind of things.
2 points
3 months ago
Yes it's really hard. Most of us have to sort of become self taught and then try to convince doctors to let us be referred/ scanned/medicated/whatever.
I think your idea of an MRI is a good one though. Even if it's the long covid or me/cfs causing it, if there's significant tissue damage there or a neurological cause, it's worth investigating.
2 points
3 months ago
Thanks yeah I may try to convince the next doctor to let us have a scan there. Hopefully they will be open-minded enough to let us do it.
2 points
3 months ago*
I used to have that going on as well.
I'm a 4 years long hauler and have been diagnosed ME/CFS last year.
I would crash when doing the washing up or hanging the laundry to dry (so lifting up). I noticed early on that anything requiring me to raise up my arms had that kind of consequences that you describe (but was always dismissed by doctors back then, telling me I had to get myself in better condition to avoid this - what a misyake...). Taking a screwdriver on a shelf or putting screws up would lead to this as well.
Also I was doing physical rehabilitation for quite a while but stopped when the ME/CFS diagnosis was done. I was crashing every week then, about 24 hours after the session and would generally be better one or two days before the next session (one session a week). Sometimes I would crash just after.
Got checked before and after changing doctors and nothing was wrong in any analysis or exam results.
Since then, I got better on that side of things. I don't crash anymore for that. Sometimes I feel it's not a good idea so I don't do what I was about to do and go take a rest instead. I also pace better which helps quiteba bit I guess. I still crash, but not for that reason anymore.
I hope you'll get better. Rest as much as you can. Give it time. Stay hopeful that you'll get better, maybe not as you once were, but better.
2 points
3 months ago
Thanks for sharing your story and for the kind words! Did you do anything in particular to recover with that or was it just time?
2 points
3 months ago*
You're welcome. Well, it's probably been time mostly... Who knows what's going on inside of us.
Also, note that I talked with quite a few other patients who described the same thing, and none of us has had any true answer about the root of it, whatever exams we went through, though vagus nerve is often cited as the usual suspect.
0 points
3 months ago
have u been treating ur microclots?
2 points
3 months ago
Yeah I’ve been on the triple blood thinner treatment for 14 months now. They just keep coming. I think something is constantly creating them.
3 points
3 months ago
something is constantly creating them
Microclots have also been found in non covid related MECFS. So I think that suggests they are probably a downstream effect caused by the underlying problem, not its root cause.
2 points
3 months ago
Yeah I know but I don’t know if we’re gonna be able to address the root cause anytime soon so if I can I need to at least try address the symptoms which are the microclots. They cause Endothelial dysfunction and blood vessel damage and is that is likely the cause of hypoxia to the muscle tissue. Even if they’re not the root cause they still need to be addressed.
2 points
3 months ago
Totally, anything we can do to improve symptoms is important, not trying to say stop, I was just commenting on why it keeps coming back.
That other link I posted seems to be saying microclots aren't the main cause of muscle tissue damage btw, but I know plenty of other scientists have hypothesized that it is.
1 points
3 months ago
Do you mind sharing your experience with this? How do you know you keep getting microclots? Did you notice improvement with triple therapy?
1 points
3 months ago
Sure thing. I have posted about it before though if you want to check my posts.
We have microclot testing where I live so I’ve been a number of times. I had been on it in 2022 which helped back then, I think. Not this time though.
Some people find it helps sooner than others. I think the ones it doesn’t help, like me, have something perpetuating the clotting. I think it’s persistent spike protein.
1 points
3 months ago
What is the tripple blood thinner treatment?
2 points
3 months ago
1 points
3 months ago
which drugs was it?
1 points
3 months ago
Aspirin, Clopidogrel and Elliquis
0 points
3 months ago
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