Not all steps are "created" equal !

[Hanna]

Hi,

On good days, I can walk 30 mn twice a day. That makes for me 3600 steps each time.BUT...
Those are steps in my little garden, or park, on the grass without people around, no noise or any disturbances from the city life.

This day, I woke up with good parameters - thought it was a good day- and I tried to walk on the pavement of the path outside of my building. 8h30 in the morning, any one except my physiotherapist with me (in case of a problem). The path begins with some gradient, so I know that I have to climb it on my return.

I made about 80-100 meters before to go back, and after sveral steps, I began to experiment bad symptoms -always the same . It begins with contraction in my thighs (quadriceps), then I begin to feel spacey and struggle for each steps with the fear that I won't make it. It is less than 60 steps to the top, but real struggle. Sympathetic nervous system on alert, all the alarms are "ringing" and then I have to stop everything for a while. Classic PEM, but after 120 steps in total, far from the 3600 that I can on a regurlar basis on the grass (even with some gradient).

What is the logic here ???
And this is always the same ! I can't reach any autonomy outside the house without my wheelchair.
I have been sick with ME/CFS 20 years, and this phenomenon has been recurrent for more than 10 years now. As if, walking on the pavement was reminding of all the bad past evenements when I collapsed on the ground and couldn't stand up then for hours and days. Everytime (except once) it happened on street walking, standing in buses or shops, NEVER IN NATURE WITH CALM.

STEPS in crowdy/city environnements are not equal to steps in the nature/wilderness OK I understand. I can understand the over-stimulation that the brain is experimenting. But 3600 steps against 60 steps I don't understand this gap !
As if there was some PTSD reactivated by the nature of the ground/environnement (all the past collapses on pavement/floors crowdy environnements) within just a few steps !

Do you experiment something like this ?

 

[arewenearlythereyet]

Hi,

On good days, I can walk 30 mn twice a day. That makes for me 3600 steps each time.BUT...
Those are steps in my little garden, or park, on the grass without people around, no noise or any disturbances from the city life.

This day, I woke up with good parameters - thought it was a good day- and I tried to walk on the pavement of the path outside of my building. 8h30 in the morning, any one except my physiotherapist with me (in case of a problem). The path begins with some gradient, so I know that I have to climb it on my return.

I made about 80-100 meters before to go back, and after sveral steps, I began to experiment bad symptoms -always the same . It begins with contraction in my thighs (quadriceps), then I begin to feel spacey and struggle for each steps with the fear that I won't make it. It is less than 60 steps to the top, but real struggle. Sympathetic nervous system on alert, all the alarms are "ringing" and then I have to stop everything for a while. Classic PEM, but after 120 steps in total, far from the 3600 that I can on a regurlar basis on the grass (even with some gradient).

What is the logic here ???
And this is always the same ! I can't reach any autonomy outside the house without my wheelchair.
I have been sick with ME/CFS 20 years, and this phenomenon has been recurrent for more than 10 years now. As if, walking on the pavement was reminding of all the bad past evenements when I collapsed on the ground and couldn't stand up then for hours and days. Everytime (except once) it happened on street walking, standing in buses or shops, NEVER IN NATURE WITH CALM.

STEPS in crowdy/city environnements are not equal to steps in the nature/wilderness OK I understand. I can understand the over-stimulation that the brain is experimenting. But 3600 steps against 60 steps I don't understand this gap !
As if there was some PTSD reactivated by the nature of the ground/environnement (all the past collapses on pavement/floors crowdy environnements) within just a few steps !

Do you experiment something like this ?

Since I got heart rate monitoring easier, I have found this. Some days the same walk to school to pick up my son raises my heart rate more than other days. Fast heart rate signals bad days for me. I have a limit of 4000 steps, but more importantly I keep my heart rate within those steps under 110 bpm. And ensure that I don't do more than 2 hrs per day of heart rate between 79 and 110. This definitely has nothing to do with how fast I'm walking.

Some days just pottering around the house and I can do 2 hrs, other days I could do a lot more before reaching my limit (light gardening, light lifting and carrying). This is just an observation at the moment ...I haven't worked out what drives it. All I can say for now...is that bad days mean my heart rate rises quicker than on good days. I seem to have 2 bad days a week mostly in succession. There isn't always PEM associated with these bad days. If I do 4 hrs, or if I overdo it and do 2 or 3 min above 120 bpm I will get PEM.

 

[rosie26]

On good days, I can walk 30 mn twice a day. That makes for me 3600 steps each time.BUT...
Those are steps in my little garden, or park, on the grass without people around, no noise or any disturbances from the city life.

I get this too.

I have a lot of trouble going into big buildings, high ceilings. The moment I step inside my walking gait changes. I slow right down and walk with my legs further apart because I feel so unsteady. I also notice I don't blink my eyes much because I am trying to keep a balance. So there is rapid change to my ME and/or POTS status.

My supermarket is right at the end of a large shopping mall. I walk around the outside of the mall to get to the supermarket and only go into the mall if I really need to. I am much more comfortable and able to walk more freely if I walk around the outside the building.

I find I can walk around 20 minutes at a slow pace in wide open areas without too much stimuli. It's usually around the 20 minute mark that I start to feel the lightheadedness and flaring of other symptoms.

 

[Kati]

Hi @Hanna

i wonder if the difference in experience also has to do with whether you are talking with the physio as you are walking, because for me it makes a difference. Talking and thinking requires much battery juice (blood to the brain) and i can't walk and talk at the same time.

I also agree that street noise, sensory stimulation is draining.

The most frustrating part of it all is trying to explain to people and they can't understand.

 

[Mithriel]

It could be proprioception problems. Many ME people have a positive Romberg sign (think that's the one!) where they fall if they close their eyes. Sometimes I drop like a stone other times I just feel a bit unbalanced. When it is bad it happens even when I blink. Proprioception tells you where you are in space and is a vital sense we take for granted.

In the house, I touch things even if I don't actually hold on. When I was still walking, it took me a while to realise that I gradually lost my balance or even fell because I was in an open space. If I have nothing to hold on to I now know that I unconsciously press down with my feet to give my brain a reference point for keeping me upright.

It could be that your feet can work out your position on grass more easily than on concrete so it takes more effort.

Walking close to a wall can help your proprioception as well it is all clues to our position. The wide legged stance and arms out for balance is also a sign of balance problems. Everything is just more work for us.

We have a lot of strange things to contend with but this one is not talked about enough.

 

[Hanna]

If I am indoors but not at home, I have indeed to cling to the walls, as you describe @Mithriel, wide legged stance and arms out for balance.
And outdoors, same thing if there are some movements around me (it disturbs my equilibrium). And if everything is quiet, just this weird thing about the nature of the ground which changes my capacities so much!

"It could be that your feet can work out your position on grass more easily than on concrete so it takes more effort". This is difficult for me to imagine if you are not walking bare foot... but it works exactly as if my feet were sending a comforting information to my brain, when walking on the grass/earth.

PS: I have a positive Romberg like many here.

@Kati, I wasn't even talking with the physio. But sure, it would have been an additionnal burden, and probably I would have stopped walking earlier.

@rosie I have also this 20 mn mark when walking on good days in a quiet environnement. And nothing has changed in 20 years. No matter what I do in order to try to expand my capacities.

 

[rosie26]

@rosie I have also this 20 mn mark when walking on good days in a quiet environnement. And nothing has changed in 20 years. No matter what I do in order to try to expand my capacities

@Hanna I know, this is interesting to hear you are the same as well. The 20 minute walk has always been the limit for me as well, it hasn't changed in all the years of my ME.

 

[Hanna]

I realise that I have underestimated the overstimulation part of our disease as I am living 95% of the time alone, stucked at home for a looooong time now (no TV, minimal radio, just a little bit of computer). And it seems that proprioceptive skills are a BIG drainer of energy as well as other stimulations are.

 

[manasi12]

Ground reaction force is quite less on the grass as compared to solid concrete floors. Same about sandy beaches which are more comfortable for me .I can stand much longer on the beach.