Symptoms questions - input welcome

[mermaid]

I have been ill for 15 - 20 years so I should really be an old timer and know it all? However, things come and go and I am struggling a bit right now and wondering what this is. I think it is possibly orthostatic intolerance kind of issues? I suppose we often fluctuate and maybe Covid in Dec 2020/stress/pushing myself because I am alone and the only one to do things now, may have affected how I am.

I had a bit of a scare a week ago when I went round to my neighbour to lend him my BP machine. 'I will show you how it works' I said. I had been up at 6.30 for a dental appointment then went to my volunteering job, which is usually mostly sitting, but I had done a bit more standing than usual, and then went to get the bus (sitting waiting and on the bus), then straight around to my neighbour. So I suppose you could say I had been on the go for about 10.5 hrs without a lot of rest. I was shocked that my BP usually I thought low, was almost 130 over 79 - the highest I had seen it. I did retake it after 5 mins and the top figure dropped quite quickly so I was surprised but not too worried.

I have been worried for a few weeks about feeling wobbly a lot, with shaky legs in particular. I got the BP machine back last night and took my BP last night and today and it seems that in fact my BP is still very low, or was this morning, with the systolic in the mid 90s and the diastolic in the 60s. My pulse is not low though and goes up to through the 70s and low 80s after just a little exertion (eg kneeling to do a bit of light weeding for an hour). I am on T3/Liothyronine only and I think the pulse is a bit higher on this anyway.

I tried sitting and then standing up to check the difference. I guess I should try this out lying down really? My BP and pulse both went up but pulse less than 10 (about 8 on one occasion) so would not qualify for a diagnosis of POTS if so little. However I guess these things can be on a spectrum? ie not a diagnosis but enough to give me shaky legs maybe? I have checked in the past and not felt I qualified though not comfortable with standing for long, though it varies a lot. I have not been great for a year or so, and wondered if having mild Covid had altered things, though the symptoms are not huge - fatigue/brain fogginess/wobbly legs and not all of them all the time.

 

[hapl808]

I don't think those readings are unusual. When I was more moderate, exercise would raise my blood pressure temporarily, then it would come back down. An exercise bike could raise it to 140's/80's I think.

Now that I'm more severe and unable to exercise at all, my BP is normally low, but my resting pulse is in the 80's or 90's, and it jumps to 120+ if I go to another room in the house, then takes maybe 5-10 minutes to return into the 90's once I sit down.

I wouldn't think the BP changes are causing your symptoms - at most maybe a slight downstream effect, but obviously just judging by my own experiences. I also find a Garmin wearable is helpful to measure not just HR, but also Heart Rate Variability that seems to correlate with my sleep, PEM, etc. Nice to have a solid metric.

 

[Judee]

I tried sitting and then standing up to check the difference. I guess I should try this out lying down really? My BP and pulse both went up but pulse less than 10 (about 8 on one occasion) so would not qualify for a diagnosis of POTS if so little.

https://www.tandfonline.com/doi/full/10.1080/21641846.2018.1512836

You still could have it. The study above says,

"A full 10 min of standing is required to avoid underdiagnosing POTS..."

There is also something called a poor man's tilt table test but I don't recommend doing it on your own...better to see if your doctor would provide it in his/her office with someone very close at hand in case you start to black out.

Many doctors don't understand it though. Mine only did a one minute test.

So if you ask them for the test, take a copy of that study with you, and/or better yet send it to them ahead of time.

 

[mermaid]

I don't think those readings are unusual. When I was more moderate, exercise would raise my blood pressure temporarily, then it would come back down. An exercise bike could raise it to 140's/80's I think.

Now that I'm more severe and unable to exercise at all, my BP is normally low, but my resting pulse is in the 80's or 90's, and it jumps to 120+ if I go to another room in the house, then takes maybe 5-10 minutes to return into the 90's once I sit down.

I wouldn't think the BP changes are causing your symptoms - at most maybe a slight downstream effect, but obviously just judging by my own experiences. I also find a Garmin wearable is helpful to measure not just HR, but also Heart Rate Variability that seems to correlate with my sleep, PEM, etc. Nice to have a solid metric.

Thank you @hapl808 My BP seems OK today thankfully. Reasonably stable and not so low. However my pulse was in the low 60s soon after I got up, but just now (it's evening now) leapt up to 90 after a walk downstairs and standing to do a few gentle things, and then coming back up again. I just rechecked it and it's now calmed down to 78. So I guess it's the same difference as yours but at a lower level. I don't think my pulse was as high as this before after standing and moving around gently. Still as long as it returns to a better level than I guess it's not a problem.

Thank you re the Garmin. I didn't know what that was but I have googled it and I can see that might be useful so I will think about buying one.

 

[mermaid]

https://www.tandfonline.com/doi/full/10.1080/21641846.2018.1512836

You still could have it. The study above says,

"A full 10 min of standing is required to avoid underdiagnosing POTS..."

There is also something called a poor man's tilt table test but I don't recommend doing it on your own...better to see if your doctor would provide it in his/her office with someone very close at hand in case you start to black out.

Many doctors don't understand it though. Mine only did a one minute test.

So if you ask them for the test, take a copy of that study with you, and/or better yet send it to them ahead of time.

Thank you @Judee The study is interesting. Isn't it describing essentially the poor man's tilt table test though? The other day I tried standing for 5 mins after sitting but of course I hadn't actually been lying down. I noticed that my pulse went up 10 points when I stood up when I tried this the next day, but after that it didn't seem conclusive.

However I will do it properly next time lying down and then standing for 10 mins. I doubt that I will pass out as I am not that severe I think. I am guessing that maybe I am just worse than I was before and I am noticing it.

I am just concerned about my symptoms as I don't recall them being this bad before, though I am still walking about and managed to go on a bus into town today. I had horrible brain fog most of the day but I didn't feel excessively bad apart from that and a lot of fatigue. I was doing a volunteering job which is mostly sitting down.

It's difficult for anyone here in the UK to get to see their GP at present due to Covid (assume you are not in the UK?). Also I am moving soon, so I will have to monitor this myself and only go when I have moved and report it if I think they might take it seriously.

I do have some private healthcare and am moving closer to better private hospitals so may be able to pursue it in a different mode if I have to.

Just had a further thought - I do suffer from time to time (specific triggers) from vasovagal syncope. I wonder if any of what I am suffering from relates to this? It's usually if I have a bad shock that it happens, though in the past when I was younger I got it from various other reasons. Maybe the 2 situations are quite different.

 

[Judee]

Isn't it describing essentially the poor man's tilt table test though?

It does sound very similar.

However I will do it properly next time lying down and then standing for 10 mins.

Ooh, have someone nearby at least or wedge yourself between the couch and a wall or somesuch just in case.

I did this years ago and I believe I did start blacking out but sat down really quickly so I'll never know for certain. However, I really think I was.

And I'm not severe either so I only tell people I have some form of OI.

I only passed out once when standing from a laying down position. It was during my teen years but it never happened again but I think that's because if I stand still in one place for longer than a few minutes, I start to feel anxious and sorta antsy. I think that's my brain telling my body to move so the blood can get back up to it.

Do you get that antsy feeling too?

Anyway, please be careful and let us know how it goes.

 

[mermaid]

@Judee yes, I definitely get that antsy feeling! Sometimes my neighbour comes over to talk to me over the fence and I have to drape myself over the fence to stand there, or I sometimes will sit down on the nearest flower bed.

I will be very careful with the test though. Will make sure a chair is handy. I have mentioned at the end that I do have vasovagal syncope incidents from time to time, and I tend to get a lot of signs then that I am about to pass out. I had a nasty accident last Nov, where I tripped and landed on my knee with a lot of pain and injury. Luckily inside a building. I kept passing out for the next 15 mins so had to lie flat until it stopped. Horrible and very embarrassing!

I also had an incident in January when I had been sitting for a long time and I stood up and got instant vertigo and had to throw myself to the ground. Maybe all these kinds of incidents are related.

 

[Rufous McKinney]

I think it is possibly orthostatic intolerance kind of issues?

feel very similar lately...something is up and figuring it out is hard.

was almost 130 over 79

what a nice blood pressure, wish I had....

My BP and pulse both went up but pulse less than 10 (about 8 on one occasion) so would not qualify for a diagnosis of POTS if so little.

You could try an informal home Tilt Test...methods around here someplace. Its like 10 minutes.

I think I've never decided I could really just stand up not moving for 10 minutes.

I am a bit similar, in that I don't generate a HUGE increase in heart rate yet its goes up enough that I feel really affected. There must be a spectrum.

And I"m a high blood pressure mostly person with something POTSY going on. Try making any sense of that. Eat more salt?

Gravity just reaches up at me, and tries to Pull Me (see an REM song). I just feel NOT GOOD at all standing.

Moving is easier than standing, but then I have to stop because I can no longer go around a block and live to tell.

I get to a bench across the street, for 10 minutes sometimes, and often I just start to collapse on a public bench on a public street. Cars go past, glance over.

Gravity its huge.

 

[mermaid]

feel very similar lately...something is up and figuring it out is hard.



what a nice blood pressure, wish I had....




You could try an informal home Tilt Test...methods around here someplace. Its like 10 minutes.

I think I've never decided I could really just stand up not moving for 10 minutes.

I am a bit similar, in that I don't generate a HUGE increase in heart rate yet its goes up enough that I feel really affected. There must be a spectrum.

And I"m a high blood pressure mostly person with something POTSY going on. Try making any sense of that. Eat more salt?

Gravity just reaches up at me, and tries to Pull Me (see an REM song). I just feel NOT GOOD at all standing.

Moving is easier than standing, but then I have to stop because I can no longer go around a block and live to tell.

I get to a bench across the street, for 10 minutes sometimes, and often I just start to collapse on a public bench on a public street. Cars go past, glance over.

Gravity its huge.

Yes, I realise that my BP is pretty good really especially as it's usually under 120 the top figure when at rest. Mind you I have discovered that my waking BP is ridiculously low, so no wonder I feel dozy when I wake. the last 2 days I took it, but I sat up and moved into the next room and waited about 5 mins or so before taking the BP but it was around 89/62 or something similar.

I carried on taking it every minute while I sat there, and it stayed around that mark for about 5 mins until I stood up. My pulse which was low 60s immediately shot up by 10 points but I stood very very still and it did not really rise any more while I stood there for 5 - 10 mins. Once I began moving around my pulse went up more to around 80.

I agree with you re the spectrum of the orthostatic intolerance thingy. That was my thought too. Some people are more sensitive to feeling the changes than others. Mind you, I had the shaky legs again today and that was in the afternoon when BP and pulse had risen to reasonable levels. I think it may be an adrenals thing.

Moving is definitely easier than standing, though not so good at present. I feel so weak and wobbly, though I do seem OKish once I get going.

 

[Rufous McKinney]

Moving is definitely easier than standing, though not so good at present. I feel so weak and wobbly, though I do seem OKish once I get going.

moving is erratic here and I can move better at night so thats when maybe some dishes or push a vacuum (never mind that recently)

Earlier today I was sort of moving about then boom: "wind" blew into my right knee, its screaming like inflamed and pinching weirdly, and I'm paralyzed at the bathroom door.

Can I got down the stairs?

So I can't even tell you IF a body part that works one minute, will be operational, the next.

I"m also so spaced from being sick right now, I'm hitting the hallway and door edges: uh oh there. Wobbly?

 

[Rufous McKinney]

I carried on taking it every minute while I sat there, and it stayed around that mark for about 5 mins until I stood up. My pulse which was low 60s immediately shot up by 10 points but I stood very very still and it did not really rise any more while I stood there for 5 - 10 mins

since I'll be lying around here for a while, I can tell......I should try harder to see whats up with BP here recently.

I did a sort of tilt test, simply I took a long shower which is uncommon, laid down felt so strange I just checked and I was racing pretty good. But I had leaned on the shower wall alot! Maybe I am really much worse than I told myself I was.

 

[mermaid]

moving is erratic here and I can move better at night so thats when maybe some dishes or push a vacuum (never mind that recently)

Earlier today I was sort of moving about then boom: "wind" blew into my right knee, its screaming like inflamed and pinching weirdly, and I'm paralyzed at the bathroom door.

Can I got down the stairs?

So I can't even tell you IF a body part that works one minute, will be operational, the next.

I"m also so spaced from being sick right now, I'm hitting the hallway and door edges: uh oh there. Wobbly?

Oh dear @Rufous McKinney you do sound as if you are struggling! Interesting that you move better at night. I wonder what that is about?

Weirdly I felt MUCH better today. No wobbly legs and brain fog. I am now wondering if I had a dose of Covid so slight that I misinterpreted it. Either that or I badly overreached myself and got symptoms I don't usually get, but that resting up more has at long last reset things.

Considering I had a bit of a traumatic day yesterday with a friend of 18 years announcing to me in an email that I hadn't noticed that we had not been friends for months and the fallout from that was hysterical tears from me, I am surprised to feel better not worse! I have no idea what the announcement is about or what I have done, though it took me half a day to work out that I had been 'unfriended' by her so I am guessing that has something to do with it.

 

[Rufous McKinney]

Socializing is hard enough with out finding out your friend has pushed some button to ban your presence in their space.


RealLy? Thats so harsh. These days who knows what is up with people when these things happen,

 

[hapl808]

These days who knows what is up with people when these things happen,

And I would say the people themselves often don't understand their own motives and emotions.

 

[Rufous McKinney]

And I would say the people themselves often don't understand their own motives and emotions.

I've recently simply had to face I am unlikely to see or hear from people, I once at least heard from now and then.

I got an email response from somebody I've known for 40 years, and it just left me feeling like that was the last time I'll hear from her. A good friend 20 miles away, hasn't responded in two years.

I understand they are busy, and its fine. But where do you put it?

If I was funner, if I could do things (people get together to do things)...

 

[mermaid]

Socializing is hard enough with out finding out your friend has pushed some button to ban your presence in their space.


RealLy? Thats so harsh. These days who knows what is up with people when these things happen,

I presume it was a Facebook comment re the 'friend' thing, but it took me half a day to discover that she had 'unfriended' me - it never occurred to me as she has still been replying to my emails until now in a reasonably friendly fashion.

As she is ill herself (both mentally/physically), I had just thought she wasn't writing on Facebook because she was ill. The unfriending thing would not have occurred to me as we are not teenagers! I thought naively that intelligent adults would discuss any problem they had with each other. I have no idea what I put on Facebook to incur this result.

 

[Judee]

Maybe all these kinds of incidents are related.

I do wonder if they might be. Those incidents sound really concerning. Please be careful and get tested by a doctor soon if you are able.

Earlier today I was sort of moving about then boom: "wind" blew into my right knee, its screaming like inflamed and pinching weirdly, and I'm paralyzed at the bathroom door.

Oh, no, @Rufous McKinney. Please take care. That sounds truly awful.

 

[mermaid]

I've recently simply had to face I am unlikely to see or hear from people, I once at least heard from now and then.

I got an email response from somebody I've known for 40 years, and it just left me feeling like that was the last time I'll hear from her. A good friend 20 miles away, hasn't responded in two years.

I understand they are busy, and its fine. But where do you put it?

If I was funner, if I could do things (people get together to do things)...

'funner' - fitter? Yes, indeed, that is the whole problem of having or not having friends. Unless you have a certain level of function then you cannot initiate the process that makes friends. I have been in this area for 18 years and it's taken me a lot of time/energy to find people I can relate to and to maintain that.

I now have 4 people fairly close by who I see regularly though not that often. Only one of them has chronic illness in the way that I do, so I am limited to just having meals with them really but they all have understanding of my limitations. That's not including the other friend who has just dumped me. It was a 3 hr round trip to see her by public transport and that got harder and harder for me to maintain and doesn't drive either so it was happening less and less.

I am moving to a retirement flat where they are older than I am and I will be interested to see how much understanding they have at the social events of my own lack of stamina and food intolerances. As a 70 year old they will probably expect me to be 'normal'.

 

[Rufous McKinney]

As a 70 year old they will probably expect me to be 'normal'.

my best friend's mother is 90 something, weeks of Xmas cookie making. I pulled off 12 cookies and dare not eat one.

Another friends mother rides bicycles into mtns every week. She's 88 or something.

'funner' - fitter?

folks I know its- go to nature.

We just go to nature, go on a hike. Raised rural, and my friends are mostly biologists like me.

So now sitting on a bench seems problematic.....

I am moving to a retirement flat where they are older

But that also sounds real nice. And four friends is at least something.

I can always call my friend Susan. She is precious to me. And will I ever see her again, four states away? She begs me to come see her...and she would take care of me. She even has a guest house.

Why can't we even take advantage of the friends with Guest Houses.

(I still have friends, but I'd have to show up..and then the shock and horror of what has happened to us, would be in plain daylight! (me and my husband, with his own list of unravelments).

 

[mermaid]

my best friend's mother is 90 something, weeks of Xmas cookie making. I pulled off 12 cookies and dare not eat one.

Another friends mother rides bicycles into mtns every week. She's 88 or something.



folks I know its- go to nature.

We just go to nature, go on a hike. Raised rural, and my friends are mostly biologists like me.

So now sitting on a bench seems problematic.....



But that also sounds real nice. And four friends is at least something.

I can always call my friend Susan. She is precious to me. And will I ever see her again, four states away? She begs me to come see her...and she would take care of me. She even has a guest house.

Why can't we even take advantage of the friends with Guest Houses.

(I still have friends, but I'd have to show up..and then the shock and horror of what has happened to us, would be in plain daylight! (me and my husband, with his own list of unravelments).

Yes, I have older friends who can do far more than I can. One in her mid 80s is very frightened of Covid and has hidden herself away, but she can still walk into our GP and get a booster vac when she has to rather than go on public transport which she doesn't trust. That must be a walk of around 40 mins each way, with the last bit uphill. I would not dream of doing that. My father at 83 before his stroke was still riding his bike and digging his allotment.

Yes, I think the retirement flat will be OK and the social events will be on my doorstep if I want them. Every time I walk up the stairs here, I think... not much longer. Hills and stairs are now the bane of my life. Hard to imagine that only 10 years ago.

The legal stuff seems to be taking for ever. I just want it to be over now.

Your friend Susan sounds very kind. Will she consider coming to visit you?

I did manage to travel to a couple of places last year with the aid of disability assistance on the train, which was better than I expected it to be. When I move, I have discovered that I will qualify for free train and bus fares within the London area as I will be right on the edge of Greater London and will get this perk as a state pensioner. How much I will use them is another question! I suffer from travel anxiety now since I got ME so I have that barrier as well as the physical stuff.