Your functionality?

[Jyoti]

I've been reading stuff written by doctors, researchers and patients--on dysautonomia as well as ME-- for ages and occasionallyI think I have a fledgling handle on the facts.   But sometimes, I wonder how my experience compares to others--subjectively.  Obviously, we can never fully know another's experience, but I started to consider how many hours a day I can be upright.  That seems like a fairly straightforward measure, though of course there are plenty of fun add-ons that are not included (like GI distress, dyspnea, blood pressure, etc.).

So just asking: how many hours a day are you able to be upright, either sitting, standing or moving around?  On average, naturally.  And not in a flare  

I am finding that my 'good' pattern looks like this: four-five hours of being up during which time I can do a lot of what I once was able to do, though brain fog prevents the cognitive activities from being as fruitful.  I can clean, read, talk on the phone, walk or ride a stationary bike, buy groceries, go to appointments.  Cooking is hardest--standing still will tank me almost every time.

But after those four or five hours, I need to be flat on my back for the duration.  Usually even getting up for food or water or the bathroom is treacherous.  It is odd to me how I seem to cross a line between feeling relatively normal to feeling just awful.  I do try to anticipate that moment (with help from my Garmin's Body Battery) but often don't get it quite right.

Thanks in advance for sharing your time upright--how long, how good and what happens when you are up too long.

[MikeO]

well if this asked last year at this time i would have said i was struggling with passing out just trying to get up had two visits to the ER for snocope related injuries and being upright was limited to just a few hours before i needed off my feet.

Since i have made huge gains picking off one issue at a time. I kinda feeling guilty posting this but i can make it all day without issues or needing recliner time. Presyncope has been rare once a month and been very mild and is no longer a fear that was always on my mind.

When i do feel the need to be of my feet is not linked to how long i have been up (well maybe) but what was the stressor that caused my symptoms.

Just sharing my world for now

 

[Jyoti]

That is FANTASTIC @MikeO.   We have to celebrate that a LOT!  Because ultimately, any improvement for any of us makes improvement for all of us a little more within the realm of possibility.  Do you think it was primarily dealing with the glucose issues?

[MikeO]

13 minutes ago, Jyoti said:

That is FANTASTIC @MikeO.   We have to celebrate that a LOT!  Because ultimately, any improvement for any of us makes improvement for all of us a little more within the realm of possibility.  Do you think it was primarily dealing with the glucose issues?

going back on my changes first was to get my meds worked out so meaning removing offending meds and then getting the new med doses right for me (in the past i was always overmedicated to a fault). next i figured out that i am sensitive to histamine (allergies, colds etc...) and would vasodilate me and cause presync for me so i take antihistamine when this happens and so far works for me. 

Yes then i suspected food was a huge stressor for me but went down quite a few rabbit holes till we figured out that i have atypical diabetes so having good control of my glucose and has been a huge help. when i mess up a bit the fatigue, blurry vision and orthostatics are right on que. 

Then we did treat for SIBO not to long ago all i can say is i have a ton more energy and gained more weight (sigh) not walking like the hunchback of notre dame.

The last change my GI doc has me doing is not drinking milk and is noticeable. i don't feel like i need to explode when bending down or putting my socks on and see an improvement in bloating. after my scoping the Doc will be discussing food with me.

Oh and my high doses of D3 and adding B12 i swear helps as well. my hip pain that i have dealt with for a couple of years cleared up.

sure there is more but the this is the big ticket items for me.

 

[Jyoti]

What a great year, then.  Even hip pain gone!  Amazing.

[MTRJ75]

Somewhat like OP, the standing still for too long and the bending plus standing activities still get me, but I feel like I have a few hours (depending on tasks) of functionality per day. 

The problem is that I often feel like I can do far more than I actually can and then when I try, I wonder how I thought I could actually do any of it. 

[Jyoti]

@MTRJ75--that is helpful for me to hear.  And I totally relate to 

27 minutes ago, MTRJ75 said:

I often feel like I can do far more than I actually can and then when I try, I wonder how I thought I could actually do any of it. 

What happens when you are up too long?  What are your symptoms, if you don't mind my asking?  

[MomtoGiuliana]

When I am not in a flare I am able to stay upright all day.  In a flare I can be everywhere from somewhat disabled (if I keep up with fluids I can manage to work and do most basic tasks) to almost completely unable to stand up without severe symptoms such as dizziness, weakness, tachycardia, fatigue, nausea, etc.

[Jyoti]

1 hour ago, MomtoGiuliana said:

When I am not in a flare I am able to stay upright all day.

This is incredible to hear.  And helpful.  Thank you!  So happy to know that you do have that much capacity when not in a flare! I think I must be in a kind of constant flare where I can with careful management do the minimum of the things I need to do.  I have been diagnosed with ME/CFS as well.  Sometimes I wonder if that is accurate, if perhaps I simply have POTS.  But perhaps it contributes to my never ending lack of resiliency.  In any case, this is MOST useful to hear, from both of you and from anyone else who wishes to share. I really appreciate it.

[Pistol]

@Jyoti I only lie down for sleep, otherwise I can sit all day. I can walk for about 15 minutes but then I have to sit a spell. If I walk too far I wont be able to get back. What I cannot tolerate at all is standing. A PT did three counts once - I had to stand at a counter until I had to sit down. Each times it was a bit over 2 minutes. I become symptomatic before that - heaviness in the legs, nausea, shortness of breath, dizziness and tachycardia with palpitations. As long as I sit immediately it takes about ten minutes and it usually subsides. If I dont sit down I will pass out. 

I can be active doing something most of the day, but I have to do things in spurts. I can do dishes but then rest, or I can shower but then rest. And I have the most stability in the mornings, that is when I schedule all appointments or do my chores. The rest of the day I sit around doing relaxing things. 

Exercise is pretty much impossible for me. I can do a bit on the rowing machine but nothing upright. 

[Jyoti]

Again--so appreciative to hear about your experience @Pistol.   I have the same symptoms with standing too long.  And panic, as well.  Though I know the panic is just the body saying--you are about to faint.  I have stability in the mornings as well.  Often, I really feel almost like I used to before I got sick, but it feels like I get so many heartbeats a day and if I use them up early, that's it!  Then,  I have to be horizontal to slow things down.

I am learning a lot from you guys and it will help inform what I ask for from my doctors going forward.  I tend to be stoical and it is hard for me, unless I am totally trashed, to evince a lot of weakness.  But I am in a situation where I need to be in bed, without pillows, 19 hours a day and that doesn't seem all that great to me.

[Sushi]

Like a few others, I can be upright all day, though mostly sitting. I only have to lie down if I have seriously pushed past my limits. I do need to wear compression knee socks all day though. The big change for me was having a cardiac ablation for Afib, as they also ablated the autonomic ganglia in the heart as they are a source of Afib. So the Afib ablation was also a cardioneuro ablation and afterwards I could stand up for 45 min to an hour. Before it was 5 - 15 minutes.

[Jyoti]

1 hour ago, Sushi said:

The big change for me was having a cardiac ablation for Afib,

That was a big difference!  I know you weren't sure how it would impact dysautonomia symptoms, but it is wonderful it was so helpful in that regard as well.  I'm really interested in the fact that at least the three people who have responded are mostly able to be upright all day.  It is adds a lot to my perspective on my own situation.  Thanks again.

[Jyoti]

And...@Sushi, you do a fair amount of exercise, no?  You ride a bike, right?  How much of that can you manage?

[Sushi]

5 hours ago, Jyoti said:

That was a big difference!

Yes, really huge effect in daily life as I no longer even think about how long I will need to stand to do things like make a meal or stand in line at a store. Evidently, ablating these ganglia promotes sympathetic function. I wish that more of us could have this treatment but there will need to be a lot more research for it to be available through insurance, as mine was.

Quote

And @Sushi, you do a fair amount of exercise, no?  You ride a bike, right?  How much of that can you manage

I do exercise most every day but with great care. I have learned to “snack” on exercise—5 or 10 minutes at a time and keeping my heart rate fairly low. This way I am able to avoid PEM yet keep some level of muscle strength. For instance a 10 minute bike ride about twice a week, some yoga poses here and there during the day, 3 or 4 minutes of resistance-type strength exercises scattered through the day. Were I to do it all at once, I think that I would get PEM. I do think that the ablation also gave me more stamina as well.

[MTRJ75]

On 2/11/2024 at 5:11 PM, Jyoti said:

@MTRJ75--that is helpful for me to hear.  And I totally relate to 

What happens when you are up too long?  What are your symptoms, if you don't mind my asking?  

Muscle weakness, shakiness, difficulty focusing. It varies. It's interesting that I don't really feel the brunt of it until I sit back down most times. 

One of the latest HealthRising blogs talks about how oxygen isn't getting to the muscles, which may explain some of this. 

[Sea otter]

On 2/12/2024 at 12:58 AM, Jyoti said:

I have been diagnosed with ME/CFS as well.  Sometimes I wonder if that is accurate, if perhaps I simply have POTS. 

Glad you mention this. Because I see so many people telling POTS is not as bad itself. I am aware that combination of POTS and ME must be brutal. But those 2 conditions separated can be brutal too. I was diagnosed with POTS and before that one dr thought I have ME. But symptoms are so similar so I think this is simple POTS, like you also said. It is definitely confusion between POTS and ME. 

[Jyoti]

On 2/12/2024 at 7:59 PM, Sushi said:

I have learned to “snack” on exercise

I love this! Thanks for the concept.  Now...the practice.

Thanks @MTRJ75 for detailing your experience when you have over-extended.

1 hour ago, Sea otter said:

It is definitely confusion between POTS and ME. 

It can be, I guess.  There is a lot of overlap.  Teasing the symptoms apart is not easy sometimes.

Appreciate everyone's input.

[MaineDoug]

Great topic! 
My current numbers:

Sitting up         2 hrs

Standing           10 minutes 

Walking             5 minutes 

Reclined.          21 hours 

CHOP exercise (Recumbent bike)                   50 minutes!

Other exercise   0!

(All limits due to excessive cardiovascular response and increasing cognitive impairment with posture/activity)

LOL, it was a lot worse last year before POTS diagnosis and salt/water. Yesterday was my FIRST ANNIVERSARY of HYDRATION! Before that my numbers were:

Sit             2 minutes 

Stand       2 minutes 

Walk         4 minutes 

Exercise   0 minutes

Flat            23 1/2+ hours 

 

@MikeO, ALL DAY! You’re killing me!

 I have high hopes that after my total hip (3/18/24), and more progress on the CHOP I’ll have much greater ability! I’m currently at 3 1/2 months of the CHOP. The protocol extends to upright biking 🤗 at month 4 and walking month 6, I may have to adjust to account for the total hip rehab. I’ve been working hard to get as far as I can before surgery so I can tolerate the hip rehab. 

[MikeO]

18 hours ago, MaineDoug said:

ALL DAY! You’re killing me!

Sorry Doug didn't mean to kill you off Lol....sure your hip replacement over time will really help. Can't stress enough how important exercise is and staying active is. I had some bad hip pain for a couple of years so i slacked on exercising and it was notable as to how i felt. so i jump on the treadmill every morning before breakfast (can't say i like it but i do it).

Pulling for you and hope the surgery goes well. 

[Jyoti]

18 hours ago, MaineDoug said:

My current numbers:

This is ...well, not great to hear.  On your behalf.  That is not much up time, but it is so good that the trend is upward.  23 1/2 hours flat is hardly living.  I know we are very creative in terms of finding ways to make a life from bed, but that is extreme.  I hope along with @MikeO that your time upright continues to increase, particularly after your hip surgery.  But keep at the exercise.  It sounds like you are making a lot of progress.  

And it is nice to hear from someone who is not up most of the day.  I am, as is obvious, trying to understand what others' experience might look like and I anticipated a range.  One thing is clear though from these responses--if you can get the right diagnosis, then you can get at least some treatment/intervention and things do get better.  So figuring out what your special stuff is seems to be critical.  

[MaineDoug]

Thanks @Jyoti @MikeO,

This was eye opening! I thought most of us were in similar straits. 😂

To be honest, my function is so much better than last year, I feel fortunate! I am very optimistic that post total hip (3/18) and recovery I’ll make even more progress, and by month 8 of the CHOP I expect/hope to be a community ambulator! Walks, shopping, take wife out???🙏 I’m not expecting the World! My Thruhiking and Winter Mountaineering days are behind me I’m afraid. 🤬

But I’ll be glad with short strolls in Acadia National Park, and visiting Bar Harbor with my beloved wife! ❤️🌈🕉️☯️

[Karen Elaine]

This is a great question, and is actually one of the things my PT (POTS rehab) asked me regularly so we could gauge my progress.

When I began rehab (Dec. 2021), I was on my back almost all day. Simply sitting up in bed would cause a huge adrenaline surge with the accompanying symptoms, most notably brain fog, shortness of breath, and tach. So my total sitting-up time was less than an hour a day (basically, only while I was eating). My brain fog was so severe I could hardly think even lying down. 

Now, I can sit up (with my feet up) all day long with some exceptions. If I've gone out that day (dr. appt, walking, etc.), I have to lay down for a few hours, due to shortness of breath and full body pain (I also have hEDS). I'm also able to work or study all afternoon and into the evening (mornings are still slow).

I'm still unable to be fully upright (standing or walking) for very long-- 20-30 min max if I'm moving, less if I'm standing still. 

I use my recumbent bike 30 min x2/week, and can walk almost a mile at my local rec center x1 most weeks. I also do some isometric strength exercises most days.

It can be slow going, but I'm so grateful for all the progress I've seen over these past few years!

[Jyoti]

Great progress, and encouraging to hear about @Karen Elaine!  May your trend upward continue.