I am POTS but what’s ME?

I’m sitting at the computer typing this wearing sports compression leggings and a sports’ heart rate monitor, when the most strenuous activity of my day is likely to be a sitting shower (at which point the sports equipment will come off!).

Topics touched on in this post: POTS vs ME symptoms; heart rate monitoring and exercise; exercise for POTS; post-exertional malaise; adrenal fatigue and POTS; diet and nutrition.

Background: I’ve had ME 17 years but I’ve recently acquired an additional PoTS diagnosis effectively backdated 17 years. I’m trying to get to the bottom of which is which in terms of symptoms and management.

This is a post which is more about asking for tips from you than offering tips (although you may be able to infer some tips from what I’m already doing). Please comment on the end of this post, rather than Twitter or Facebook, and then other readers can see your tips too.

I’m feeling a little stuck and confused. My confusion stems partly from the blurred boundaries between POTS and ME/SEID (see Am I PoTS or is it Just ME for background on this). Since writing that post I have had a formal Tilt Table Test diagnosis of POTS, but confusingly the SEID renaming process now includes a Tilt Table Test as part of the diagnosis (not as part of a diagnosis of exclusion, so not saying that you have POTS instead of SEID/ME because your heart rate increased when tilted). This leaves me a little confused both in terms of illness identity and practical advice. Is PoTS just part of ME for a subgroup and therefore ME strategies apply?

Symptoms

Currently my symptoms are more obviously POTS than ME (if it is possible to separate out the two). My most stressful symptom is concrete legs which I seem to be getting more frequently again, despite being on beta blockers. This means that I can’t leave the house by myself and sometimes I get stuck within the house (halfway up the stairs is the worst). I even get this from sitting upright. My understanding is that this is caused by blood pooling in my lower legs meaning there isn’t enough blood flow to my thighs, I can still move my calves and can sometimes do a little shuffle. It definitely helps to know what causes this. Previously I was told it was ME fatigue related which didn’t really fit and led to unnecessary extra bed rest (more on that in a future post on symptom based pacing).

Standing up I’m getting the belt-tightening-around-my-chest sensation, which might be more worrying if I hadn’t recently had lots of cardio tests. I’m also getting more dizziness standing again, although strictly speaking this is maybe low blood pressure rather than tachycardia related. By the way, when is low blood pressure dangerous? The other day my home monitor gave readings around 84 over 49, with related symptoms. I spent the day in bed, drank loads and ate salty things. What would you do in this scenario?

I had stopped wearing my heart rate monitor because my readings had become boringly low with the beta blockers, and it is a little uncomfortable to wear, but I wore it again yesterday to check. Although I’m not getting the previous bizarrely high readings I do frequently go over 100bpm standing while on Bisoprolol to slow my heart rate (technically still POTS because resting is more than 30bpm lower).

The two conditions have such similar symptoms that if it wasn’t for my sometimes odd viral symptoms I would think that CFS/ME was a misdiagnosis (afterall I was diagnosed with a diagnosis of exclusion method and they didn’t test for POTS at the time).  I don’t really think it’s a misdiagnosis but part of me suspects that my non-POTS-ME may be relatively mild underneath all this POTS stuff and therefore I’m wondering if I should concentrate on POTS based advice.

Exercise and Heart Rate

Exercise is the main point of confusion. Although POTS is another condition where exercise makes you feel pants, it does seem to also be an important way to get better if done right. The crucial factors seems to be to start off lying down and strengthen calf muscles. I have got to the point that I can do this recumbent ME-specific yoga most days if I don’t have a shower:

Even before taking beta blockers I could do this keeping my heart rate under 85bpm (about the same bpm as writing this now). There seems to be growing advice to keep heart rate low in order to avoid ME relapse:

Watch from around 30 minutes in.

It makes a lot of sense to me that this heart rate issue is where POTS and ME create a downward spiral, with the tachycardia leading to ME crashes.

Looking at this from the other side of the coin though, at what point is heart rate low enough to not count as requiring exercise pacing? Yesterday I tried out 20seconds (really cautious!) of air cycling lying down and my heart rate was 70-80 during the activity (nowhere near my estimated Anaerobic Threshold of 110), but rose to 102 on standing. I don’t feel any extra post-exertional malaise today and if I had it would probably be from standing still for a few seconds rather than exercising… Does this mean I can potentially increase my lying down activity quite a bit timewise (no crude jokes please!) without expecting payback?

Also, does POTS cause progressive or sudden payback in the way that ME does? In other words, in POTS does exercise just make you feel crap at the time, or can it make you worse long-term? In ME this is really contentious because calling it wrong can leave you more limited, either from relapse after doing too much, or from the health repercussions of doing less than you potentially can. Also, can you make POTS worse by thinking and reading too much, or is it only the other way around, with POTS causing cognitive fatigue?

If you’ve got POTS and ME/CFS and have successfully increased activity I’m particularly interested to hear what you did and what you learnt along the way. I have previously got to around 95% recovered but I think that was more from luck than wisdom (or perhaps a spontaneous POTS remission?).

Adrenal Fatigue and POTS

Adrenal Fatigue isn’t really recognised by the medical establishment. You either have Addison’s Disease or you’re OK (incidentally I’ve done the Short Synacthen test because I had signs of Addison’s and don’t have it). It makes sense to me that there would be a spectrum rather than a specific cut off, but this is definitely something I view through Accepting Sceptic sunglasses as I suspect it may attract snake oil peddlers.

I’ve previously done saliva tests and had low DHEA. My cortisol results where more interesting though because the first sample of the day when I was in bed was ideal, showing my adrenal glands can make enough cortisol and I’m not generally over stressed, but I had low readings for the rest of the day (they adjust for cortisol circadian rhythm). At the time the interpretation was something vague about not responding well to the demands of the day, but now I wonder if it’s POTS and standing related. Does anyone know anything about a link between POTS and Adrenal Fatigue? A quick Google seems to indicate that Adrenal Fatigue causes POTS but my hunch would be the other way around.

Diet

I used to have a ME-specialist nutritionist who was very helpful, but I stopped having appointments, as it gets expensive for small tweaks once you’ve made the main dietary changes. Are there any UK POTS specialist nutritionists or naturopaths you would recommend who do phone appointments? 

Also, I’ve recently cut back on some supplements as I was worried about taking them for too long. It would probably make sense to increase them again and see if my pulse rate comes down. I’m doing the obvious of increasing salt although I’m not very good at being systematic about this. My ME nutritionist said something about being careful about having too much potassium (eg limit bananas and avocado). Has anyone else come across this? I think it’s to do with the balance of sodium and potassium.

I’ve been eating some Ella Woodward recipes recently and find them tastier than the ingredients suggest. Some people with POTS seem quite defensive about her saying that she was ‘cured’ by diet, but what I’ve heard her say is that the getting better bit was more down to other things, and her diet helps maintain better health. Also, she says alcohol and deviating from the diet causes symptoms to flare up (which isn’t compatible with claiming a ‘cure’). At first I thought it was just a healthy, cooking-from-scratch general diet but it often tastes quite salty so I think there may be reasons it specifically helps POTS. I don’t buy the vegan bit though and go through the book looking at how to add animal protein. Can you recommend specific recipes or blogs around eating for POTS?

Can you recommend supplements, food, herbs or essential oils which do any of the following:

  • retain fluid

  • retain salt/electrolytes 

  • help vasoconstriction

  • raise blood pressure

  • lower pulse rate

I find it frustrating because quite a lot of “healthy” things do the opposite eg lower salt, lower blood pressure etc or have both positive and negative effects e.g. caffeine is a vasoconstrictor but raises pulse rate. I also think about ME related factors like effect on immune system. I’ve started a spreadsheet trying to record this type of information for common food and drink, but it’s going to take me a while to complete. Have you come across anything similar?

Plan of Action

My initial plan (to be amended with your tips) is:

  1. Go back on previous supplement regime

  2. Wear Heart rate monitor regularly again and obey the beep

  3. Increase low bpm lying down exercise while avoiding PEM

  4. Follow anti-exercise plan with medium bpm avoiding PEM

  5. Find more POTS friendly recipes

  6. Review how I’m doing (diary?)

  7. Ask GP about increasing Bisoprolol

  8. Ask for follow up appointment with Cardiologist

Thanks for your tips (add as a comment).

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18 thoughts on “I am POTS but what’s ME?

  1. I’m not of any help but I’d be interested to hear people’s responses as I am already diagnosed with ME and under process of testing for POTs (currently being given advice on the working diagnosis that I probably do have it) and already getting quite confused about figuring out the best way to manage the two!

    Liked by 1 person

  2. I can’t help, but I need some help from you please! I have had ME for 15 years so I am well used to pacing and relapses! After many months of putting it off I finally set up and put on the heart monitor today. Following your original post I set the alarm to go off when I reach my AT. (calculated at 101)
    It went off when I reached something from the fridge, made a cup of tea, tried to get the top off a pot of supplements! Closed the door! Got up from the bed too quickly, transferred onto my electric wheel chair, drove along the hall on my chair, heated up my dinner, coughed, sneezed, ate my dinner, talked and laughed. Every time it went off I tried to get my heart rate down as soon as I could by being still and breathing slowly. But sometimes I just had to continue for a minute or so in order to get my food etc. I took it off this evening as it was just depressing me (and the strap hurt around my chest) finding out that even on a resting day for me (no outing, no visitors) so much of what I’m doing is bad for me. I have spent many months in the past just lying on the bed. I don’t want to do it now just to stop the bleeps! I LOVE only having one carer a day, and being able to heat up my own meal. I tried moving very slowly which helped a bit with the bleeps.
    I’m hoping that today was just a worse day as I felt ill with ME symptoms last night after visitors with children dring the day. Last week I was able to go on short scooter outings and walk a bit from room to room and feel fairly ok. But of course I don’t know what my heart rate was doing.
    Do you wear monitor in shower as I’m sure my sitting shower will be up to my AT.
    How can I use the monitor to help me without becoming so depressed and focussed on symptoms? I’ve spent years creating the best quality life I can despite symptoms.
    Thanks!
    Sarah

    Liked by 1 person

    • Hi. This reminds me of when I first wore the monitor! Although in my case it was more obvious that standing was the problem. I’m not an expert, as you can see I’m trying to work it out as I go along. To start with maybe concentrate on your morning resting heartrate and cut back general activities if this goes up (I’ve heard this is particularly useful for avoiding crashes). It maay also be worth just observing what makes it beep for a few days before changing behaviour, perhaps for you this varies a lot with post exertional malaise, which would be informative and less depressing.
      An idea might be to set the beep higher eg 120 and see what that makes you avoid and definitely not do more than a minute over 120bpm. Once you feel confident about this gradually reduce it eg 119 the week after. If it works for you, you should start to feel better. Any successful strategy will mean you can do more in the long run, it’s just very very hard to be patient now…
      I don’t wear my monitor in the shower just in case it ruins it. I can tell from my reaction afterwards that my heartrate must be high. I try to limit the number of showers but having some hygiene is one of those things that trumps heartrate monitoring for me.

      Like

      • Thank you. I’ve only just found your reply as I didn’t seem to get a notification. Thanks for your ideas. I’m just monitoring my MRHR at the moment. My nutritionist has said that equipment to test heart rate variability is a better measure for people with ME. http://www.heartmath.com but these are more expensive so don’t think I’ll try at the moment.Have you heard of them?
        love Sarah

        Liked by 1 person

      • I have heard of it but haven’t bought it yet. It is quite a different thing I think but also helpful, to do with relaxing .
        A number of prestigious researchers/doctors (who people with ME generally seem to like, an important distinction with our condition!) seem to be on board with the heartrate thing, so I don’t think I agree with your nutritionist, but I haven’t tried heartmath yet. I expect combining the two would be the best option but pricey and maybe over absorbing.
        It’s hard to know what’s just fluctuations, but I’m doing better already going back to the heartrate monitor and using some more supplements.
        With heartrate monitoring it may well turn out to be really useful for a subgroup and not for other people. I strongly suspect my PoTS tachycardia really aggravates my other symptoms so for me monitoring heartrate is likely to be central to Recovery.

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  3. Adrenal disfunction, POTS and ME…I have/had all three, plus other disorders.
    As far as adrenals, there is a link with ME, but none that I am aware of with POTS. As for ME and POTS, you can have one or the other, and you can also have both. I know some people who have POTS as a result of ME. I myself, had POTS and later got ME. But you don’t have to have POTS symptoms to qualify as having ME. I hope that makes sense. The primary thing that you MUST have to be diagnosed with ME is post exertional relapse. The profound fatigue and worsening of symptoms after exercise, sometimes called a crash is the primary symptoms of ME. If you don’t have that, then you don’t have ME.
    I know many people with POTS only who are able to successfully exercise as long as they do so seated. A person with ME will crash after any exertion beyond there tolerance level.

    In regards to your POTS symptoms, I too went through the whole salt loading thing. Its a bandaid fix. By no means does it cure anything. And your nutritionists advice seems wrong to me, because most ME experts agree that the potassium/sodium balance is way out of whack in ME and POTS. Potassium can’t get into the cells where it needs to be and sodium surrounds the cell causing the imbalance. I and some other ME sufferers I know have used Gerson therapy which concentrated on restoring the balance of potassium and sodium in the cell which then allows the cells to produce energy and increase metabolism. This problem is the basis of all disease. You can read the science here. Read Healing the Gerson Way, or check out the Gerson Therapy Support Group on Facebook.
    http://doctordonato.com/wp-content/uploads/pdfs/Biological-Basis-Gerson-Therapy.pdf

    Gerson is not a quick fox. It can take 2-3 years to restore the body using Gerson, but I have spoken to many people with various illnesses and it is a complete and permanent fix. So far I have restored my thyroid and adrenals and no longer have POTS symptoms. Prior to this I had POTS for 30 years.

    I am unclear reading your story, unless Im just having a bad brain fog day, have you taken a CPET test to determine your anaerobic heart rate? or are you guessing. I have not done this yet, but am scheduled in a few weeks and then look forward to taking on some exercise. I have been homebound and mostly bedridden for the last 3 years.

    Liked by 1 person

    • Thanks Penny. Do you think PoTS caused your ME, eg from heartrate exertion?

      I’ll look up the Gerson information. It may be that the potassium advice was specific to me as she did have my blood test results and ‘prescribed’ elyte electrolytes (if my potassium was comparatively high to sodium to start with diet could put this further out of kilter). I have previously had to do a repeat blood test because of high potassium.

      In terms of my story I’ve had ME 17 years but I’ve recently acquired an additional PoTS diagnosis effectively backdated 17 years. I’m trying to get to the bottom of which is which and think it’s mostly PoTS atm. I estimated my AT using the formula (from memory) AT = (220-age) x 0.6. I’m not well enough to do the test atm but for the purpose I’m using it for I think the estimate works for now.

      Like

      • Penny
        Ah, just realised that from your history you’ll have some real gems to add to this conversation. Thinking about the time you had POTS but didn’t yet have ME:
        1) Did reading too much or mental work ever CAUSE physical symptoms (obv apart from headaches)?
        2) Did you ever get delayed fatigue or was it always at the time? Are you saying this is the only difference with ME?
        3) How did you respond to viruses?
        4) Did you get any random viral symptoms which no-one around you had?
        5) Did you ever have lingering fatigue lying down?
        6) Did your legs ever feel heavy?
        7) What made your PoTS worse?
        8) How did you know you had ME?

        Thanks for your help

        Like

  4. Some anonymous comments from Facebook:
    1)
    I take midodrine rather than beta blockers and it works fairly well. OI is the only ME symptom, at least for me, that’s actually treatable with a real medication, so I’d say you’re right to focus on it whether the ME diagnosis is correct or not.
    Unlike · 2 · More · Yesterday at 17:29
    2)
    I have ME/CFS, Fibro, and POTS. For POTS, I am trying to get 2 liters of IV saline a week at a local hospital. At this time, I am waiting for approval from Hospital and Medicare since I’m on Social Security Disability. Otherwise, I have to travel over 4 hours round trip to my ME expert to get this done. I also take propranolol, Fludrocortisone and drink tons of water. my diet is very low carb and very low sugar but high sea salt intake. It is very hard to find a POTS doctor and on top of that finding a POTS doctor that understands ME because of PEM.
    Unlike · 1 · More · Yesterday at 18:35
    3)
    After 45 yrs with ME and IO and POTS and PEM, endocrine problems with a pile of associated problems that grows loner every year I have little hope of ever seeing the day when there will be good, affordable remedy’s to ease the suffering let alone cure anything.
    Like · 1 · More · Yesterday at 21:02
    4)
    I have POTS (on salt, midodrine) & fit the criteria for ME, but when I went to the neurologist, he dx CIDP (based on muscle weakness & nerve conduction). Now I qualify for IVIG or plasma exchange. Seems crazy to me. Hope it helps.

    Like

  5. Hi Jenny,
    I second your questions!
    I posed similar questions to my ME doctor on our most recent call actually, although a lot less eloquently. To be clear, I was asking him about orthostatic intolerance in general rather than POTS specifically, as I don’t think I have the tachycardia element. (Although funnily enough, after reading your post yesterday I decided to wear my heart rate monitor today, and it just boinged up 40bpm when I went upstairs to the bathroom. We’ll see, eh?!)
    I asked exactly the kinds of things you asked, e.g. how do I separate out what’s being caused by orthostatic intolerance (and hence might be amenable to specialist treatment in that area) and what’s ME, given that people without ME who have orthostatic intolerance can have fatigue, cognitive dysfunction etc. His take on it was that it is likely that at least some of the people who are diagnosed with POTS only would be diagnosed with ME if they saw an ME specialist. He made the very good point that most cardiologists would not be familiar with ME. So I suppose if he’s right, that SOME people with a POTS-only diagnosis actually have ME-with-POTS, it’s not that the POTS diagnosis is wrong, it’s just that it’s only part of the problem, and the POTS would need to be treated within the overall context of ME.
    At the moment, for my particular case of ME with prominent orthostatic intolerance, I tend to think of it as ME being the primary issue, and orthostatic intolerance being a potentially treatable part of that. Similar to someone who had ME with really problematic pain, who might get fantastic relief for their overall condition with specialist pain management input, but might need to adapt some recommendations (e.g. around exercise). Given the potential repercussions of overdoing it with ME, which for me can be significant and (to date) irreversible, I would go extremely slowly with anything exercise-y. I know that there is always the possibility of misdiagnosis. I suppose my feeling is that if that is the case for you, it will become clear over time.
    Maybe the whole idea of primary vs secondary vs dual diagnosis vs misdiagnosis might be helpful, combined with a risk-benefit type analysis. You know, there are a few possibilities. You might have primary ME with secondary POTS (or vice versa) or independently standing ME and POTS (seems unlikely given your history and degree of overlap but still) or POTS only (with ME as misdiagnosis). If you go with the hypothesis that you have, say, primary POTS with secondary ME, how would that change your treatment plan and what are the possible risks and benefits? For me, I have been humbled so many times by ME that whatever hypothesis and plan I would go for, ME would get my ultimate respect. I will not poke that bear. In practice I think this would probably just mean that I would proceed extreeeeeeeeeeeeeemely slowly with exercise.
    I would love to hear from people with POTS (without ME) about how their day-to-day looks. I suspect that it’s not quite as simple as feeling perfect when lying down and horrific the rest of the time. I think what’s so tricky is that there is such a lot of variation within any category, both in terms of symptoms and how people respond to particular interventions.
    Your plan sounds well thought out and sensible. You’re giving me ideas! I’d definitely talk with the cardiologist. Now that the heart rate is more under control, you may be able to address the other pieces of the puzzle (maybe blood pressure etc). Make sure they know you’re increasing salt, and I’d run any supplements you’re thinking of going back on by them in case they’d interfere (e.g. things like electrolytes).
    You mentioned that your nutritionist warned you about eating too much potassium. (Saw your later comment on this too – as you say, maybe an individual thing. Maybe you could check your potassium again? It does make me question whether the E-lyte I’m on is a good thing or a bad thing…) I have heard the opposite, that when you’re on a high-salt diet or medication to increase salt, you may need to increase potassium intake. Dr Rosamund Vallings mentions it in her book, saying that potassium can “leech out when you are on a high-salt diet”. I have been recommended by countless doctors to increase my salt intake, but I have to say that none of them mentioned this.
    I noticed that the clinic I’m aiming to attend recommends increasing potassium intake when on the medication Florinef, but at least in the written information provided on their website, do not seem to suggest increasing potassium when just increasing salt intake through diet:
    http://www.misa.ie/sites/all/libraries/tinymce/jscripts/tiny_mce/plugins/filemanager/files/Documents_for_Clinical_Areas/FABU/Fludrocortisone%20PINK.pdf
    They also list high-salt and high-potassium foods:
    http://www.misa.ie/sites/all/libraries/tinymce/jscripts/tiny_mce/plugins/filemanager/files/Documents_for_Clinical_Areas/FABU/SALT_Leaflet.pdf
    http://www.misa.ie/sites/all/libraries/tinymce/jscripts/tiny_mce/plugins/filemanager/files/Documents_for_Clinical_Areas/FABU/K_Leaflet.pdf
    To be honest, I looked into the whole potassium thing recently, and decided that because my diet is chock-full of vegetables, I am probably getting enough to counteract the high-salt aspect of my diet.
    I really like this site’s lists of foods containing particular nutrients. This one’s for potassium. Unfortunately they don’t seem to have one for sodium, I suppose because the majority are looking to decrease rather than increase: http://whfoods.org/genpage.php?tname=nutrient&dbid=90
    I’ve been thinking about trying a minuscule recumbent exercise programme (along the lines of 30 secs twice a week, that kind of minuscule!) or something similarly diminutive to build up my leg muscles. I’m well behind you on all of this, and plan to proceed at a glacial pace, so I probably won’t be able to give you tips, but I’d love to hear how you get on.
    Very best of luck with all aspects of your plan,
    Karen

    Liked by 1 person

  6. Thanks those lists are exactly the type of thing I’m after to Then put into the spreadsheet (I’ll publish it when it has some info in it). You’re right about treating ME with kid gloves, it has a nasty bite.
    The potassium thing is just confusing me. When I speak to my GP I’ll ask whether I should get my electrolytes checked again. I do know that it can be very serious to get potassium majorly out of kilter. Nancy Klimas said something about being cautious about licorice for that reason (which I think also helps with low blood volume so one of those frustrating contradictions).

    Like

  7. Hi,

    Just wanted to comment how I have pots and find reading and brain function hard and exhausting. I think it is the poor blood flow to the brain muscles… Yes if I push harder I get tachycardia! Even from brain work and even if sitting up in bed! Only lying completely flat is when I find things easy and only if I’ve not pushed my body to work hard previously. The way I see it is that the autonomic dysfunction just can’t cope with major demands and throws whole body out of more sinc if I push it harder. So yes I get post ‘fatigue’ with pots but I see it rather more like overall autonomic melt down and fatigue is an easy outward symptom I can see as a result. I can’t maintain exercise even in sitting or lying down because my I’ve become weaker thru pots not allowing me to stay strong and having Ehlers Danlos syndrome both for 30 years without diagnosis and gentle management and respect for my fragile body. Hope this helps you. Most people with eds and pots would get a diagnosis of ME because most doctors don’t screen for eds because they think it’s rare. It’s then neglected for years and looks like ME but actually it’s untreated EDS. eds causes your muscles to be weaker and tire easier than normal and needs a more gentle approach.

    Liked by 1 person

    • Livvy

      EDS is something I’ve been trying to find out about as I know it can be the cause of POTS. I don’t have obvious flexibility but there are some signs it could be relevant. Partly though I don’t feel I have the emotional reserves to be asking drs about another rare condition.

      In terms of your fatigue, is it a delayed response? Part of the difficulty managing ME is that you can feel OK on the day you do an activity and then there’s a delayed payback. Some people get this 48hrs or even longer after, so you think you got away with doing more but you haven’t (people think this is to do with mitochondrial problems). In a way when my POTS is bad it’s easier because I know straight away that I’ve done too much.

      Like

  8. BTW since writing this post I’ve noticed getting worse again from a virus ME stylie. My current theory is that ME is the primary problem that is aggravated by POTS and viruses (ie these stressors prevent my body recovering). I also predict that if I could control my POTS (or go into remission with that) and go a few months without viruses I could probably pace my way out of the worst of ME. I suspect this was the fortunate turn of events that led to 95% recovery about 10 years ago.

    Liked by 1 person

  9. Ever since your post asking if you have POTS or ME, I have been studying ME more closely. I do wonder… Maybe I do have both. Maybe that’s what makes it so severe and brings in all of the non-pots symptoms they have never been able to pinpoint. No Dr has ever brought up the idea of severe ME. Also, Dysautonomia is so much like ME, it is hard to distinguish the difference between the 2!
    So I definitely wanted to thank you for raising some questions in my mind and writing that excellent, thought provoking post.
    Since this past Spring, I have been improving after being completely bedbound for 4 yrs. Now I can move more and my cognition is becoming clearer, however I’m not sure I’m doing anything differently now that I wasn’t doing before the spring.

    I do take potassium, D3, and Citrical. I find the potassium does help, and I can’t live without high doses of D3 or I get much worse.
    My gastroparesis has calmed down, but when it was still bad, I ate a LOT of hummus, drank prepared low sugar smoothies (I like Bolthouse farms), and I drink enough water to fill a kiddie pool every day. Like you, I’m no good about being on a “program” for salt, but I do like to start the day with something protein and salt rich. Olives, V8, almond butter, and hummus should really be covered by my insurance! lol

    I’m on lots of meds for other things which all keep me more stable all around, and I still cannot imagine walking outside without help/wheelchair and all of my eye/ear coverings, walking to the kitchen, driving a car, or even sitting up for a car ride. Still looking for remission. And I wish you remission as well.
    Thank you for exploring this. I think it’s important, and I haven’t seen anyone else going there.

    Liked by 1 person

  10. Hi, to some extent the labels don’t really matter. The practical repercussions might though. On a Facebook POTS forum the other day people seemed to be talking about a boom and bust pattern and delayed fatigue (classic ME signs). They didn’t have a ME diagnosis. If they had they would’ve been aware of pacing and trying to average out activity, which may help them longer term. On the other hand, they probably would have missed out on meds and salt to help their POTS symptoms…

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