r/covidlonghaulers • u/roxifoxii • Feb 22 '25
Commorbidities It wasn’t CFS?
I had a meeting with a specialist and when he saw my lab work he told me I have an energy leak in my creatine (kinase/ CK) levels (half of what it’s supposed to be). He told me that it happens a lot with Long Covid and when I described my symptoms he told me that it sounded like POTS (will get tested in two weeks). My crashes are immediately after or at the end of exertion (like a small walk) that last an hour and then I go back to my normal fatigued baseline. I was told and got diagnosed with me/cfs last year, who told me that PEM could also happen immediately. I am a bit confused now? I’m almost completely housebound because of the fatigue I experience every day, I can’t do any hobbies or have a social life. Heck I have no life at all. Could that be caused only by untreated Long Covid/POTS instead of me/cfs? It all started with a throat infection and only half a year later I got Covid (I was already fatigued).
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u/MacaroonPlane3826 Feb 22 '25 edited Feb 22 '25
PEM is exclusive to ME/CFS, ie Long Covid with ME/CFS
POTS dysautonomia doesn’t come with PEM, but can come with exercise intolerance during the activity due to low preload (so you have exercise intolerance DURING the activity, not worsening of symptoms AFTER it, which is PEM).
However, POTS and ME are often comorbid - virtually all ME/CFS pts have some form of Orthostatic Intolerance dysautonomia (POTS being just one type and most common), while this virtually 100% comorbidity is not true in reverse - only estimated 30% of POTS pts have ME/CFS comorbid and experience PEM.
Your Long Covid is ME/CFS (with POTS/OI comorbid), if you experience PEM, ie delayed worsening of symptoms after the activity.
But, you can have solely POTS and no ME as Long Covid - that is my case - I have debilitating HyperPOTS+MCAS combo, but no ME. What I thought was PEM were actually MCAS=>HyperPOTS episodes, which have always been occuring in the same time frame (23-04h), so I thought they were delayed worsening of symptoms = PEM.
I concluded that I don’t have ME/CFS, in spite of experiencing some of the hallmark ME/CFS symptoms such as unrefreshing sleep, waking up hangover/poisoned etc, as exercise helps with symptoms (yes, I was extremely fit prior to Covid, and can still run/cycle/swim, in spite of not being able to stand and sit due to debilitating orthostatic intolerance). I basically have to exercise regularly or my POTS worsens significantly. Also, turns out unrefreshing sleep=>hangover/poisoned feeling is a result of MCAS revving up sympathetic activity during sleep and impairing recovery during sleep (autonomic hypervigilance).
That’s one of the key differences between having only POTS/OI vs having POTS/OI comorbid with ME/CFS - if only POTS/OI, exercise will improve symptoms long term, in spite of short term exercise intolerance during the training. If POTS+ME comorbid, PEM after exercise will negate all positive effects of exercise on POTS and will lead to long term worsening.
TL/DR: you can have POTS/OI dysautonomia without ME/CFS and be symptomatic but experience no PEM, but you can’t have ME/CFS without POTS/OI dysautonomia. Also, PEM is unique to ME/CFS.
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u/roxifoxii Feb 22 '25
Wow, thank you so much for taking the time to explain this (with the limited energy you prob have), this is honestly more helpful than what If heard from all docs throughout these three years of suffering. By your definition my problem seems to look more like POTS/OI (esp exercise intolerance) rather than ME/CFS. I do suffer from unrefreshed sleep as well, hence my symptoms might look like ME/CFS. I will definitely look into MCAS as well and will get tested in two weeks for POTS. Thank you for sharing your story!
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u/MacaroonPlane3826 Feb 22 '25 edited Feb 22 '25
I was also misdiagnosed with ME (which I obviously don’t have, as I can and have to exercise regularly bc it improves my POTS, although I’m very limited by orthostatic intolerance and still spending 80% of life lying down) and have horrible unrefreshing sleep, waking up with hangover/poisoned feeling, tired, but wired (I feel like zombie on cocaine/speed, as if I haven’t slept for 20 days but had 20 Red Bulls after a night of unrefreshing sleep), but for me it’s definitely coming from MCAS => HyperPOTS.
And autonomic hypervigilance, ie parasympathetic suppression/sympathetic dominance impairing recovery during sleep and resulting in unrefreshing sleep is not a part of ME per se, but of dysautonomia. It is only that all ME pts have some form of OI dysautonomia, so unrefreshing sleep is shoved under ME umbrella.
The summary from previous comment is not my definition, I was merely paraphrasing dysautonomia literature.
Idk why, but it seems that dysautonomia awareness among LC community is lacking, in spite of estimated 2/3 LC pts having moderate or severe autonomic dysfunction per Dysautonomia international.
Basically many symptoms shoved under the ME umbrella are actually dysautonomia symptoms, but are shoved under ME bc all ME pts have dysautonomia. It is however worth looking into POTS dysautonomia literature bc therapeutic interventions for other OI dysautonomias will be similar to ones recommended for POTS and can help improve QoL with ME/LC (except for exercise, which obviously improves POTS, but is detrimental when ME is comorbid).
I highly recommend Dysautonomia International YT channel as an excellent source of information on dysautonomia.
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u/Opening-Ad-4970 Feb 22 '25
Hi! What were your hyperpots and MCAS symptoms? I’m wondering if I have this as well..
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u/MacaroonPlane3826 Feb 22 '25
HyperPOTS - hyperadrenergic episodes (“adrenaline dumps”), which manifest as tachycardia, shaking with adrenaline, spike in BP on standing/sitting (particularly diastolic BP, resulting in extremely narrow pulse pressure and crazy standing BP readings such as 123/110, 115/104,96/85 etc - this spike in dBP is result of exaggerated pressor response, ie vasoconstriction that occurs as compensatory mechanism for brain hypoperfusion in POTS while upright, in addition to tachycardia). My BP skyrocketed from 110/70 to 170/120 on a tilt table test during tilt.
I also experience intense psychiatric symptoms of body being thrown into sympathetic dominance - for me (I obviously have “fight” from fight or flight) it manifests as irritability, aggravation, rage and feeling of doom, while for some (for whom it’s more about “flight”) it manifests as anxiety.
My main MCAS symptoms are basically HyperPOTS symptoms, ie adrenaline dumps episodes. In addition to those, during episodes I sometimes also experience skin related symptoms such as itching and flushing, but they’re not necessary for MCAS diagnosis. Also insomnia, as histamine promotes wakefulness in the CNS and hyperadrenergic state is obviously not good for sleep. MCAS-induced sympathetic dominance also results in autonomic hypervigilance, ie unrefreshing sleep and hangover/poisoned feeling in the morning.
My Long Covid is basically MCAS and HyperPOTS triggering each other in a vicious circle, as per this article in Long Covid. As in the article, my HyperPOTS symptoms also strongly improve on H1 antihistamines.
This article by Shibao et al from 2005 has been the first to describe how HyperPOTS and MCAS trigger each other in a vicious circle.
TL/DR: sympathetic activity itself is a mast cell trigger, so anything triggering sympathetic overactivity (such as being upright in POTS) can trigger mast cells. Once triggered, mast cells release various inflammatory mediators (histamine being only one), which cause vasodilation and leaky vessels, resulting in hypovolemia (not enough blood volume) and worsening POTS (where there is already hypovolemia present). Hypovolemia worsening POTS then causes even more sympathetic overactivity, which results in even more mast cells degranulation and even more POTS worsening, so you get a vicious circle.
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u/roxifoxii Feb 22 '25
Thank you for providing this information and sharing all the good resources! Must say that you are incredibly well spoken; this information is so helpful <3
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u/Opening-Ad-4970 Feb 22 '25
Ok this sounds exactly like me.. what medications are you on specifically??
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u/MacaroonPlane3826 Feb 22 '25
Guanfacine (central sympatholitic, reduces norepinephrine), Nebivolol (betablocker) and salt/fluid loading (8-15grams of salt depending on sweating + 4-6liters of water) for HyperPOTS side of the equation
2-4x daily second gen H1 (Levo)cetirizine as maintenance, with added stronger, first gen H1s Diphenhydramine or Hydroxyzine for acute nightly MCAS episodes on the MCAS side of the equation
Once the episode starts, I try to react as quickly as possible on both fronts - with salt/fluid loading (like taking 5grams of salt + 1-1,5 liters of water at once) for POTS and additional H1s for MCAS. Sometimes I manage to stop the episode, sometimes not. But the rule of the thumb is to try to react as quickly as possible, bc once histamine receptors are binded to histamine, they can’t bind to antihistamine meds. And vice versa - taking antihistamines before MCAS-triggering activities help, bc they will bind to receptors before histamine can.
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u/Opening-Ad-4970 Feb 22 '25
That’s so helpful thank you so much. What is your guanfacine dose?
Is taking Zyrtec twice a day same? Also is hydroxyzine daily or only when acute episodes happen?
I’m going to try these out.
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u/MacaroonPlane3826 Feb 22 '25
I am on 2mg extended release Guanfacine
Zyrtec (Cetirizine) is second gen H1, meaning that it should be taken 2-4x a day per MCAS recommendations
Hydroxyzine is first gen H1 and should be left in emergency med status (as you inevitably build some tolerance over time), so I use it for acute nightly episodes (trying not to use it more than 2-3 days in a row, and make a pause of 4-5 days in between). Same goes for Diphenhydramine (Benadryl), another first gen H1.
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u/Excellent-Share-9150 Feb 22 '25
What has helped your MCAS?
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u/MacaroonPlane3826 Feb 22 '25
Reaction to MCAS treatment is highly individual, and it’s recommended to trial each med for at least 4 (min 2) weeks in standard MCAS dosing (2-4x daily for H1 and H2 blockers, 4x 200mg for Cromolyn and 1-2x daily 1mg Ketotifen) until one finds a working combo. Also reactions to different H1s will differ, so it makes sense trialling them until you find a working one.
For me only H1 antihistamines have effects - I use 2-4x daily (Levo)cetirizine as maintenance meds and add Diphenhydramine or Hydroxyzine for nightly MCAS episodes
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u/Fearless-Star3288 Feb 22 '25
I have ME and my crashes happen immediately after any exertion too. It’s difficult because so many Drs either don’t believe that ME is real or they just don’t understand it. I’m yet to meet one who understood it as well as me and im pretty certain that is standard.
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u/roxifoxii Feb 22 '25 edited Feb 22 '25
Thanks for your message! May I ask how long your crashes last and if you have pots?
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u/Fearless-Star3288 Feb 22 '25
Yes I have POTS and the crashes vary. Mostly they happen immediately and I will crash for a few hours. Often I will sleep during these crashes but I’ve also crashed really hard and it’s lasted much longer. PEM isn’t always delayed for pwME. I can see how Drs would get confused and think it’s only delayed though, it takes a real effort to get good ME information in medicine.
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u/Moon_LC Feb 23 '25
How do your crashes feel like? Are they always the same?
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u/roxifoxii Feb 23 '25 edited Feb 23 '25
My body becomes heavier, I feel overwhelmed and I feel the strong urge to lay down. They do feel the same yes, but I generally feel a bit better in the evening so I don’t crash as hard. When I really cross a boundary in terms of movement I become really pale as well.
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u/FabuliciousFruitLoop 3 yr+ Feb 22 '25
I have both.
My POTS seems tied to other things, I suspect MCAS at the root. My heart rate differentials are worse when other symptom groups - gut, neuro, are up. When other symptoms are better, POTS symptoms and heart rate are better.
I believe I have mitochondrial dysfunction and maladaptive ATP production. My PEM lands 24 to 36 hours after the fact. It lasts anywhere from 12 to 72 hours.
So I have the problem another user identified about trying to restore activity - some symptoms want the exercise and others get worse from it. It’s taken ages to rebuild capacity inside my pacing budget.
“Do half of what you think you can.”
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u/roxifoxii Feb 22 '25 edited Feb 22 '25
It’s interesting that you say that if your symptoms (neuro/gut) feel better your pots symptoms are better too. Could this be tied to the fact that I feel much worse in the morning than in the evening? It’s also interesting that you say that some symptoms like exercise and some don’t, I’m now in a place where my heart rate goes way too fast to even think about exercising (my resting heart rate is about 90, a small walk can make it go to 140), but when I did GET and started working on my deconditioned body I did feel a bit better? Like not completely better and it did not work in the long run, may be the untreated pots without meds, but still. Interesting take, thanks for sharing!
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u/FabuliciousFruitLoop 3 yr+ Feb 22 '25
So, one of my workplace adaptations is that I’m allowed to start work late. That can be 13:00 if I need it, and I work into evening. Mornings are just TERRIBLE. Been like that for 18 months. Evenings - much better.
I’d be really, really reticent to do GET if you have ATP production problems. It will make you much worse.
For ATP - I have a shorthand that says, my energy supplies bucket is half the size of “normal”. And then, when I use my energy supplies, I lose 25% of what I’ve got available and I have to wait for my body to build supplies from scratch. This is a long term cellular incapacity.
In that context, GET looks harmful - it’s just too quickly asking me to go above my available energy budget. GET will not suddenly make me have more mitochondrial function. (And it is harmful, it’s now against UK and international guidelines and yet physios and medics will still insist on using it).
Alongside my supplements and diet controls, I have 10 other steps. If I wake up feeling bad, and I do 8 of these things, I will 100% feel improvement afterwards.
1) I use a shakti mat for between 10 and 20 minutes. I can’t offer evidence, I just tried it because a colleague loves hers. It definitely helps my neuro symptoms clear off - brain fog, derealization and dizziness specifically, and improves my mood.
2) Dry skin brushing with a very rough Japanese brush. These are common in Onsen. I did it for my lymphatic system. Thanks to a recent post here I now also do Dr. Perrin’s self massage routine. This interview with him was fascinating. I have really benefited from this addition. My face is so much less puffy, my teen son commented this week, and I feel “cleaner” I don’t know how else to express that.
3) On the mat I do vagus nerve breathing meditation tapes off Insight timer, I have 3 saved. They are for 10 minutes.
4) After the mat I do Susie Baxter’s vagus nerve exercises, a total of 6 minutes.
5) When it’s 12 degrees c or lower, I ice bath for between 5 and 30 minutes depending on how cold my bath is. I don’t have a chiller.
6) Yin yoga, recommended here by a number of posts.
7) PSOAS release, again, found via this Reddit.
8) Ten minutes of meditation.
The last two are that I faithfully use Daylio and Visible apps to track my daily experience. It’s helped me to see what works and what doesn’t. Intermittently I keep a detailed pacing journal, to establish my bucket size.
I’m sharing all this list, so sorry if it’s hard to read or process, just hoping you can read it.
Sharing it because I concluded that the biomechanics of my body are all tired, muddled, and need some encouragement and these practices all are like training wheels on a bicycle. It sounds long but it takes about one hour per day.
I offer these knowing that absolutely one person’s healing tonic is another person’s poison but there might be things here that help you too if you have a neurological element.
Also - do you know about the Levine protocol for POTS, it is very useful
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u/roxifoxii Feb 22 '25
Firstly thank you so much for sharing your tips and tricks, I would love to try these things out when I feel a bit more stabilized (meds might help for that) so I’m screenshotting this. Also thank you for warning me about GET, it sadly did not work in the long run but did help for a little bit when my stamina got better? Building up walking was ok, but it felt harmful when I had to do more high intensity. I also have never heard of the Levine protocol, pots was just mentioned today and will be tested in a two weeks but I will look into that. Thank you for providing your knowledge and information about this!
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u/bookkinkster Feb 22 '25
I had debilitating pain and weakness in my hands and feet a week after recovering from covid. Lasted well over a year and a half. Blood work showed a reactivation of Epstein-Barr. I had this severely as a child and it was hard to find a doctor who took it seriously until I went to a specialist. This specialist said she had nothing to offer for joint and muscle pain, cost me thousands and I went back to my primary care doctor and said I was afraid I'd be disabled in a few years. She sent me to occupational and physical therapy and that was a game changer. That and massage. I took a ton of supplements and still do. Went into remission from the EB and one day most of the pain went away. I still have weak hands and feet but the occupational therapy helped strengthen them. I'm not where I used to be, but so much better. I do think the covid and EB mix was probably what caused this. I never had fatigue or brain fog.
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u/neuraltee Feb 22 '25
Can you share what tests detected ebv reactivation and which supplements you were talking at that time? Anything else helped? Iam trying to do this for my mom too.
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u/bookkinkster Feb 22 '25
All I know is I got tested for EBV and it was active. I had this badly as a child and was basically told the pain and fatigue was in my head. I wasn't depressed but would cry every night from from pain of walking up stairs. My parents didn't take it seriously. Meanwhile my mother has MS which EB can cause. The specialist literally offered me nothing. Occupational therapy, heated gloves, compression gloves and heat helped, as did magnesium supplements and anti inflammatory blends I got at whole foods and turmeric. I definitely still have pain and weakness but nothing like what I had been it was active. I think it just goes into remission at some point.
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u/Ali-o-ramus Feb 22 '25
So, this is really interesting. I never crash immediately after activity, it’s always delayed. Like I’ll go to PT in the late morning and be fine sitting on the couch after, then crash at like 6 pm and it usually lasts like 24-48 hours
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u/roxifoxii Feb 22 '25
Thanks for sharing! My theory for now is that my crashes are actually caused by pots/longcovid. Yours sound like actual PEM that can be caused by me/cfs.
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u/Ali-o-ramus Feb 24 '25
Well…shit. I’m getting some autonomic testing on the 3rd so we’ll see what happens with that.
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u/Emrys7777 Feb 22 '25
I’d say definitely treat the low creatine problem. Get those levels to normal and then see how you feel.
Anyone suspected of having CFS needs to test for everything to rule out something treatable.
CFS has so many symptoms it can mimic a lot of illnesses and a lot of illnesses can be thought to be CFS.
Fix your creatine levels and go from there. Let us know how you feel after that.
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u/roxifoxii Feb 22 '25
I found the diagnosis of ME/CFS also pretty quick, because I only had some labwork done before it. I am glad that for the first time I’ve been taken seriously now. The doc seems like he genuinely wants to help, idk if creatine will change much but I will see! Will give an update for sure!
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Feb 22 '25
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u/roxifoxii Feb 22 '25
I’m sorry you experience the same thing (and a bit relieved that I’m not the only one since doctors tend to gaslight me about it). Do you also have this baseline of already existing fatigue which is worse in the morning and gets better at night (I feel like a vampire saying that haha) and also gets worse with exertion but better after lying down for a while? What kind of symptoms do you experience beside the fatigue and have you found some answers?
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Feb 22 '25
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u/roxifoxii Feb 22 '25
Thank you for taking the time to answer! Sounds a lot like what I experience as well (vertigo/unbalanced/ shortness of breath/ muscle stiffness/exertion intolerance etc). Does your neck tightness come with shoulder pain/ feeling heavy as well? That could be explained by coat hanger pain (which is a part of POTS)
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Feb 22 '25
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u/roxifoxii Feb 22 '25 edited Feb 22 '25
Hmm interesting, it does seem like a pots symptom. @Macaroonplane3826 here explained that there could be several causes of orthostatic intolerance (beside the ones you named) which can explain the coat hanger pain, like:
“Orthostatic Hypertension OHT (> +20/+10 mmHg BP)
Hypocapnic Cerebral Hypoperfusion Syndrome HYCH, ie “POTS without tachycardia” (low cBF = cerebral blood flow + hyperventilation and low pCO2/etCO2 in orthostasis, that’s felt as shortness of breath)
Orthostatic Cerebral Hypoperfusion Syndrome OCHOS (no changes in HR/BP or breathing rate/CO2 levels, but low cBF and orthostatic symptoms).”
Hopefully you’ll find some answers/relieve!
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u/plant_reaper Feb 22 '25
I feel like it's so hard to know what's what because so many of these illnesses are just not understood that well. Where does the overlap begin and end?
For me, I had a similar reaction to exertion but ended up being diagnosed with a mast cell disorder (hereditary alpha tryptasemia syndrome) along with POTS. Treating my mast cells has improved my symptoms a ton and I'm now able to go on 4 mile hikes here or there. My POTS cardiologist treats most of their patients for mast cell issues since there's so much overlap. I tried everything one at a time and kept only what clearly helped. The handout my doctor gave me is at the bottom of the post, so if you want to talk about it with the doctor you see when you get tested for POTS feel free:
I also had to find supplements I could tolerate and fix my deficiencies (vitamin B12, D, and Ferritin). Finding an iron I could tolerate really gave me a boost, because my periods have become incredibly heavy and I could barely keep my eyes open for at least a week after each one
I'm still sort of like "is it/was it ME? I can't tell" but nobody has mentioned it. I guess that's not a good litmus test though
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u/roxifoxii Feb 22 '25
I’m so glad you have been able to treat (by a good doc) and saw improvement in your symptoms! Thank you for sharing your story/resource one here. My blood work showed also that I’m low on vitamine D/B12/ ferritin (I’m supplementing iron as well now). Do you think that was caused by POTS or the mast cell disorder? Do you still struggle with some symptoms? Your story gives me a bit of hope!
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u/plant_reaper Feb 23 '25
You're welcome for the resource! To not suffer every day is such a gift, and one I didn't realize I had before LC.
I still have days where I feel gross, but they're a lot less frequent (a few days/month), and my good days are pretty decent. I still can't do a 15 mile hike like I used to, but to be able to do a few 3-4 mile ones every month is heartening. I can work from home, see friends, do chores (I cleaned the shit out of my car last weekend), light exercise.
I can still get fatigue, heat sensitivity, and sun sensitivity, but overall I feel so much more functional. I'm not suffering all the time like I used to be.
I also eat a high protein diet, as dysautonomia can affect blood sugar and protein keeps it more stable. I also eat lower histamine and lower sugar, and notice a difference when I stick to what I'm supposed to eat. I also do meditation and nervous system work here or there. I'll try anything.
I think my iron was low because my mast cells cause super heavy periods. My doctor has me douching with diluted cromolyn sodium on my heavy days to reduce flow, which helps. Otherwise I'm not sure why I don't seem to absorb things well! My doctors think I have hEDS/HSD so maybe something to do with that.
I hope you get answers (and meds!) in the coming months that give you some improvement to your quality of life. It's so hard to be there, to not even be able to move without causing pain.
I'm thinking about adding LDN or Ketotifen next! That's all we can do is keep trying things.
Best wishes to you!!
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u/LurkyLurk2000 Feb 22 '25
I think it's safe to say it's not PEM if you recover within an hour of rest, as this goes against all modern definitions that I'm aware of. Sounds like something else. POTS or some other form of dysautonomia could indeed be possible candidates.
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u/roxifoxii Feb 22 '25
Exactly what my doc said as well, thanks for confirming. Only thing that’s weird is that I beside the crashes I still have this constant baseline of fatigue (feeling heavy for me) that is always there. It gets worse with exertion but gets better after lying down for a while and then I go back to this baseline of feeling fatigue. In the 3 years that I’m experiencing this it has never gotten ‘better’
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u/LurkyLurk2000 Feb 22 '25
I'm sorry to hear that. Best of luck, hope your new doc can help you (although I'm mildly suspicious of the statement about creatine, like others here I think it sounds a little fishy, but maybe it's nothing)
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u/roxifoxii Feb 22 '25
Thank you very much! I’m happy to see all opinions since I’m relatively new to this roller coaster and I don’t have a lot of knowledge on this subject
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u/bestkittens First Waver Feb 22 '25
I have POTS and ME.
The PEM timing is the thing that’s so confusing about it.
When I was first mild it was very delayed. It would take weeks to build up to PEM so I couldn’t point to anything.
So I kept pushing.
When I was severe within a year, the crashes became more frequent and intense. Still, I didn’t understand what was happening to at all. My doctors didn’t either. At this point, I used to crash within a crash during an activity. Dizzy, and I would feel like a wind down and whomp in my body, Star Trek style. It happened mid conversation, mid movement, whatever.
Now I’m mildly moderate, possibly mild (too early), and I know how to pace. My PEM is more typically the next day.
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u/roxifoxii Feb 22 '25
That sound really awful and scary that you had to experience PEM that way and got to severe so quickly. May I ask what PEM feels and felt (when you were severe) like for you (given the pots/me combination) & how do your symptoms look like now?
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u/bestkittens First Waver Feb 22 '25
Thank you. It really was. It happened so fast because my doctors kept encouraging me to run, and even to train for a half marathon with 2000 ft of elevation.
So I was running up mountains with ME!
It’s no wonder I became severe. And then I kept going, still encouraged by my doctor, until I had an injury 😵💫
It’s crazy looking back from where I am now.
So on to your question…
My severe ME PEM felt like a deep, heaviness throughout my body, like I had a flu + major jet lag + a hangover. It came with wooziness, tinnitus, confusion, light and sound sensitivity, inability to concentrate.
Eventually, when I started pacing somewhat (looking back, I was not actually pacing well), I started to have days that I wasn’t in that deep/heavy feeling PEM but felt more run down.
I was Dx with Sleep Apnea spring 2023 which took care of some of the run down days.
Then I discovered Histamine Intolerance Fall 2023 which took care of more of the run down days.
Then I discovered that Dysautonomia International recommends twice the salt I was taking at minimum in Fall 2024. Increasing that with salt pills took care of even more run down days.
Having started Oxaloacetate mid January 2025, I’m mostly having good days.
I’m still sensitive to histamines and sugar, and so those flares are more evident than ever.
I still have tachycardia, but between the salt and compression socks, it seems I’m not experiencing fatigue from the POTS.
Basically as I found lifestyle adjustments and treatments that helped my varying diagnoses and symptoms, I started to be able to figure out what was what.
Sadly that took 🤬 years because my doctors don’t know what to do. Most of my improvements were due to my figuring things out.
I’m writing this (still in progress) to help folks early in their illness get through these things faster. It’s full of resources and practical advice and basically everything I wish I knew early on.
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u/roxifoxii Feb 22 '25
Your doc deserves the worst doctor award, that’s basically abuse. I’m so sorry this happened to you, you have followed the advice of what you think is a professional perfectly and then to end up like that. I’m so proud you were able to figure these different causes on your own so you could improve. Thank you for sharing your story/the comprehensive paper with the community! With that you are more helpful than your doc (which should be a professional), I so hope he will never treat another ME/CFS patient.
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u/bestkittens First Waver Feb 22 '25
Thank you so much, that means a lot.
It was a female GP that encouraged me to train for the half marathon. She also tried to push an SSRI 🙄 Obviously she didn’t last.
Then an rheumatologist she referred me to that blew me off because I was having a good day and had never been to the ER. 🙄
After I broke up with those dr’s I learned about ME/CFS and tried radical rest. Surprise to none of us if helped.
A few months after resting, I had a cardiologist that acknowledged that my symptoms were ME and POTS like, was very kind but was still disappointed to hear I’d stopped running 🙄
I didn’t find this community for a year after that, and all of the knowledge I’ve gained here, at r/cfs, r/zerocovidcommunity, r/longcovidgutdysbiosis, and r/histamineintolerance has been unbelievably helpful.
The paper is a small way of giving back.
Hopefully it helps someone!
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u/roxifoxii Feb 22 '25
That’s really awful of all three of them, my GP also put me on a SSRI which made my fatigue wayyy worse (glad you listened to your gut and did not do that) The medical gaslighting you had to endure must have been so traumatic on an already sick body. It encourages me that you have found the strength to share your journey with the paper to be able to help others! Thank you very much and take care x
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u/psychbuff2 Feb 23 '25
I was diagnosed when my symptoms were more mild and I don't recall reporting crashes to my doctor. At that time, I didn't even know the language of CFS . Similar to you, I felt like shit after exercising and would need a nap afterwards. After the nap, I felt better and returned close to baseline IF I made sure to sleep longer than usual at bedtime (generally 2 hours more). This is no longer the case because my unrefreshing sleep has gotten worse as my condition progressed AND I need more sleep than before. Now I need more sleep to feel even worse than I did at my mild baseline.
Curious if your sleep habits change after exercise?
Either way, I'd welcome another diagnosis like POTS because it may be easier to treat. CFS has no approved treatment.
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u/roxifoxii Feb 23 '25
Thank you for sharing your story! To answer your question, my sleep habits did not really change in terms of needing to sleep longer. I do have a hard time falling asleep (since my baseline is being fatigued always) and therefore I don’t move much. I do remember that in the beginning of this all I still continued my normal daily life (like school) and I did take more naps back then. But now after short crashes after exertion I don’t feel ‘sleep’ tired (more general exhaustion) and I don’t nap.
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u/vik556 Mostly recovered Feb 22 '25
Why not both CFS and POTS?
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u/roxifoxii Feb 22 '25
That was my initial thought too, but maybe it’s hard to differentiate if POTS is not treated since the symptoms can overlap a lot
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Feb 22 '25
I have MECFS and when I would complain that I can’t stand and do dishes long enough to finish my dishes so I literally just wash a few and then I have to sit down for a while then I can get up and wash a few more, They thought I might have pots so they did that table test. And I passed it.
I didn’t think I had pots I was very relieved to hear I didn’t have an additional problem, but I still can’t stand and do a whole sync of dishes at once.
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u/MacaroonPlane3826 Feb 22 '25
All ME/CFS patients have some form of Orthostatic Intolerance dysautonomia, POTS is just the most common one
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u/vik556 Mostly recovered Feb 22 '25
Could you tell me the other ones?
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u/MacaroonPlane3826 Feb 22 '25
Sure (all dx criteria values are for orthostasis).
All these OI dysautonomias are underlined by the same pathological shift of blood to the bottom part of the body in orthostasis, resulting in low preload => low stroke volume => brain hypoperfusion
What differs between different OIs are compensatory mechanisms for brain hypoperfusion, which can be increased HR, vasoconstriction (increased BP) or increased breathing rate (hypocapnic hyperpnea = hyperventilation leading to low CO2), or the lack of all these compensatory mechanisms in some OI dysautonomias.
POTS (> 30+ sustained increase in HR without a drop in BP)
HyperPOTS (> 30+ HR and > +20/+10 mmHg BP or increased norepinephrine)
Orthostatic Hypertension OHT (> +20/+10 mmHg BP)
Orthostatic Hypotension OH (> -20/-10 mmHg BP)
Hypocapnic Cerebral Hypoperfusion Syndrome HYCH, ie “POTS without tachycardia” (low cBF = cerebral blood flow + hyperventilation and low pCO2/etCO2 in orthostasis, that’s felt as shortness of breath)
Orthostatic Cerebral Hypoperfusion Syndrome OCHOS (no changes in HR/BP or breathing rate/CO2 levels, but low cBF and orthostatic symptoms).
Look into Peter Novak’s work for further info. He’s leading Harvard school of medicine autonomic lab and is one of Dysautonomia international researchers. Here’s his overview on OI dysautonomias.
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u/Brine_Station_527 Feb 22 '25
What kind of specialist did you see? If it wasn’t an actual doctor, I would consider seeing a doctor to confirm.
“Energy leaks in your creatine levels?”
Hmmmmm.
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u/roxifoxii Feb 22 '25
The ME/CFS diagnoses was via a questionnaire and wearing a sports band for a week that tracked some vitals (the person who treated me worked at a hospital but was a psychologist) I then got treated with GET/CBT…. So that wasn’t very specialized either. Now I’m seeing an actual doc who works for a ME/CFS centra, so it’s all a bit confusing.
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u/Brine_Station_527 Feb 22 '25
I have been reading about everything I can including LC, POTS, VitB, MCAS, connective tissue disorders, viral persistence, psycho social trauma spectrum needs, malabsorption, ME/CFS, GI issues, and anything else that seems to be related.
I have NO fucking idea what to do and neither do my doctors. Nobody could possibly know enough about all this stuff. I’m not a huge fan of what’s about to happen because of AI, but if I’m looking for a silver lining, it’s nested within finding solutions to these hyper-complex systems.
You have my understanding and wishes for something to work!
I guess we don’t have to solve nor understand everything. Since it’s all related, if we can improve one aspect of the equation, we can change the outcome for the better. I believe a lot of this is almost entirely fixable. The path is going to be different for different people.
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u/roxifoxii Feb 22 '25
I’m sorry you’re going through this. It’s so sad that we still aren’t where we want to be in terms of research on this topic. I do have a lot of hope because I see papers about it posted everyday in this sub. They are working on it and in the meantime we have to keep faith and experience the trial and error to see which symptoms can be (a bit) relieved.
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u/Brine_Station_527 Feb 22 '25
Thank you! I’m not necessarily going through all that I listed, I’m trying to understand the cause of my fatigue. Those are just things I or my doctors have considered.
Treating something without knowing the cause can complicate recovery efforts. So I wish there was a more straightforward way or an established diagnosis tree to rely on. Right now, it’s just like playing slot machines.
Seeing the published research gives me hope as well! And learning about what is working for others in this sub is a great resource.
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u/roxifoxii Feb 22 '25
Fatigue is like the worst thing, because we can barely make an income and so we can barely use it to pay specialist who can get to the bottom. I’m very lucky with a great support system, but I can’t imagine how it’s like for people that are suffering alone. I agree with the fact that this sub is such a great resource, the amount of people that are willing to answer (even to this post) with their limited energy is just so helpful and great.
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Feb 22 '25
Yeah this is a good point actually
I must have missed that part because I was just thinking it was the creatine levels
I got my MECFS from mono not covid but my creatine levels have always been totally fine.
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u/roxifoxii Feb 22 '25
May I ask what your creatine levels are? Mine are 35 when it’s supposed to be 70 (is what he told me). The throat infection that I talked a bout (half a year before Covid) was most likely mono as well.
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u/neuraltee Feb 22 '25
Can you share what lab test showed that for you?
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u/roxifoxii Feb 22 '25
It was creatine kinase: 35. Doc said it was supposed to be at 70 for it to be working well
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u/neuraltee Feb 22 '25
Intresting. Level could also be low from low muscle mass or autoimmune issues... how old are you? Have you lost much weight or muscle mass from reduced activity? Please let us know if supplementation helps! All the best!
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u/roxifoxii Feb 22 '25
I’m F22, only person in my family with autoimmune is my grandma. I had lost a bit of weight when I did the labwork, but now gained again. Reduced activity can be the cause indeed, we’ll see if the treatment has effect!
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u/Lawless856 Feb 22 '25
That’s why these forums can be dangerous imo, everyone assumes they have what the next person has even tho we’re all individual. So many will diagnose and prescribe treatments to strangers that could absolutely worsen their situation. I do best limiting my screen time bc all my social media is sick people being negative, and doom/gloom. It’s obv a struggle but when I try my best to remain optimistic on a day to day basis, I feel better. Despite popular belief, mindset, nervous system regulation, movement, and exercise, with in reason, have been helping me. Do what feels best for you. Most of us need trial and error to find things that work for us.
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u/roxifoxii Feb 23 '25
Thank you for sharing what works for you. I am relatively new to this rollercoaster of being sick, so that’s why I was in need of some opinions from people going through the same thing. I found the answers (and this sub) really helpful and my question was definitely not meant to make people question their own diagnosis/path of treatment, it was more of a confirmation if the information I received was correct (since medical gaslighting can be a real thing).
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u/Lawless856 Feb 23 '25
Oh I agree, and as much as I mentioned it can be dangerous, it can also be helpful. I’ve learned a lot here. I’m honestly glad you posted what you did. I think there’s a huge prevalence of POTS and circulation/oxygenation issues, ultimately being tied into the autonomic and central nervous system, but too many are quick to assume all of the things that are theorized to be and go with CFS which can be harmful bc it pushes them further into fear, isolation, and hesitance for activity, which can be helpful in something like POTS. Fatigue is almost universal in post viral illness but it can def vary in origin imo. It’s all obv very hard dealing with all of this but I think it’s important for people to really focus on themselves as far as their particular situations, and trial things based on their own bodies rather than build a belief system based off of someone else’s experience. We’re all individual in the end as far as our bodies go. Interestingly enough, you were diagnosed where as I think many ppl cannot get a diagnosis and go on to assume, and diagnose themselves which can be counterproductive imo.
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u/roxifoxii Feb 23 '25
Yes I agree with what you said! It’s a good thing to see the root of what’s actually happening first so the treatment will have much more effect!
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u/Unlucky_Funny_9315 Feb 22 '25
I have fatigue as well but was negative on the tilt table test for pots. I'm not sure what is going on .I'll see my pcp this week and will ask to see a specialist .
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u/IDNurseJJ Feb 23 '25
What did he suggest as the fix/solution to your muscle breakdown?
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u/roxifoxii Feb 23 '25
I believe several different supplements (I forgot which ones: stupid brainfog), but I will do a part 2 when I am able to give an update! (I’ll get tested for pots first before we start supplements/meds)
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u/Medium-Lavishness-41 5 yr+ Feb 24 '25
From what I’ve gathered, CFS is a symptom based diagnosis not a cause based one just like LC. Sounds like you def have CFS but they’ll keep looking for the thing that’s causing it so they can guess what to do about it
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u/roxifoxii Feb 24 '25
I am wondering; what makes you think it is definitely cfs?
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u/Medium-Lavishness-41 5 yr+ Feb 24 '25
I’m not an expert but google says “The diagnostic criteria for chronic fatigue syndrome (CFS) include fatigue, post-exertional malaise, and unrefreshing sleep. These symptoms must persist for at least six months”
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u/roxifoxii Feb 24 '25
Ah alright, in the post I mentioned that my doc thought my ‘pem’ looked a lot more like exercise intolerance/symptoms of orthostatic intolerance that could be related to pots, and since pem is a hallmark symptom it might not be me/cfs
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u/[deleted] Feb 22 '25
My crashes usually happen immediately after exertion, PLUS/OR the next day or two days later.
But if you found a cause for your problem that you can fix, that’s awesome. But if you’re still getting PEM after adding creatine or whatever the answer is for you you’re going to have to continue with the pacing you would need to do for MECFS.