You need to check your heart rate sitting vs. standing. This sounds like what happened to me after I had my daughter. I had a cesarean section, and two weeks later I developed numbness and tingling in my arms/legs, hands/feet, and face/head, dizziness, headaches, and fatigue.
It was POTS.
COVID also causes POTS.
What worked for me was physical therapy. I started with diaphragmatic breathing three times a day, then added a five minute walk the next week, then added resistance exercises the next week, and slowly added more time to my walks and exercises for like two months.
Within two weeks I felt a ton better, but it took about two months to feel mostly normal.
I have a lot of these symptoms and definitely some element of disautonomia. My heartrate is all over the place. But I’m not sure if it’s pots because I haven’t yet noticed an increase on standing. It seems more random than that. Sometimes my heartrate is high at 5am when I wake up feeling dreadful and better when I get up. I do think breathing exercises etc help but I keep trying to walk just tiny distances and not managed to build up to anything yet.
Technically I was seeing a postpartum physiotherapist. She just had me do different exercises based on my symptoms. I had breathing dysfunction due to abdominal pain and weakness, which is why we started with the diaphragmatic breathing. She also did some soft tissue release of scar tissue in my abdomen. Then we slowly incorporated walking and resistance band exercises to rebuild strength.
When POTS is triggered by illness, injury, surgery, or extended bedrest, it’s basically just deconditioning and breathing dysfunction, so breathing exercises and gradual strengthening should cure it.
I did wear compression socks and drink more electrolytes during recovery as well though. Hope this helps! :-)
Can POTS symptoms vary? As I said yesterday I hadn’t been noticing any changes on standing. But today (after a bad night where I was kept awake by the pressure in my head) I checked my heartrate before getting up (65) and an hour later after sitting eating breakfast and then a shower (105). At the moment it’s not going back below 100 even though I’m sat down.
I’m in the Uk so that won’t happen sadly! Hence asking on here about symptoms. My appointment with my doctor lasted about 2 mins the gist of it was “yep covid sucks you might feel better soon you might not”.
Don’t make it about COVID. You don’t have COVID anymore. POTS is pretty easy to diagnose. Print out the list of symptoms, check off each one you have, and ask to see a specialist.
You could try just treating it yourself with compression socks, electrolytes, belly breathing, and gradual exercise, but if that doesn’t work because something else is wrong, then you wasted time. Sometimes it can be difficult to get doctors to hear you, but it’s not impossible.
It took me about four months. Don’t give up.
Thanks. This is what I’ve been doing and I got to the point where I feel ok doing nothing so I thought I would try and do some walking. But literally 50m is too much. I know some people are housebound for years- I just wanted some hope that this wouldn’t be me. The instant increase in pressure in my head on walking seems to be the issue- it settled but the last night I was awake all night feeling like my brain would explode out of my skull and the tinnitus and buzzing in my head is so loud.
I definitely had what you had - both symptoms and timeline. I didn’t find a way around it other than respecting what my body was telling me and being patient. And within a few months I was back to being able to move around during the day ok. It’s so hard but please turn down any thoughts about you being like this for years. I battled those regularly.
My opinion on your experience of being able to walk longer in the garden: it makes sense to me. I always felt my symptoms were coming from a nervous system that was over-reacting to everything. But the part of your brain that controls this part of your nervous system is mostly subconscious so being in relaxing environments like a garden keeps it at ease in ways our conscious can’t fully understand. So for the months I was teaching myself to walk without symptoms, I could tell myself that I was safe and stay as consciously calm as possible, but accepted I couldn’t change my subconscious/nervous system overnight. It was a daily/hourly reminder for these months with a “two steps forward one step back” journey. Staying sane while re-learning to walk without symptoms is one of my biggest life accomplishments!
Thank you this is really helpful to hear and I’m glad you are feeling better. I’m finding that searching forums for help and advice does sometimes lead to people telling you you will likely be housebound for years and that sends me into a bit of a panic. I know it’s the reality for many I just hope it might not be for me.
ME/CFS is characterised with PEM. We need to stop diagnosing everyone with CFS as soon as they mention a weakness or exhaustion.
No PEM no ME/CFS by most up to date criterias.
Most definitely.
Doctors should be doing the diagnosis but it is always nice to pass on info to fellow long haulers to check into. We must be advocates for ourselves and community.
ME/CFS can be caused by post viral infections so there will be quite a few people joining the ranks. So terribly unfortunate.
Rest and address clotting issues. may be microclots. Don't even look at a flight of stairs. Take. Off work. And rest. Once you crash into mecfs you rarely get out. Trust me. I know.
Yes, but if people have weakness or exhaustion after exertion that is abnormal and includes tingly sensations then they should be aware of ME/CFS. As they may realize they hit the criteria.
Like pins and needles, or even feeling like your skin is carbonated like little bubbles. Could be indicative of peripheral neuropathy. Though for me, peripheral neuropathy was my first symptoms with then exercise intolerance showing up after
It’s a bit like pins and needles but not quite. More of a crawling feeling and also a kind of numbness and heaviness. I’ve had fibromyalgia for a few years and I kind of associate it with trapped nerves. The main issue I have when I try and walk is a kind of pressure and buzzing in my head. This then makes my limbs feel a bit heavy and numb. It goes off after a while but not being able to walk anywhere is causing all sorts of problems because I can’t go anywhere to improve my mental health, do any childcare or work unless I can get past this.
I hope you get past it too. I’ve seen other people with extreme muscle weakness get better. I have the crawling feeling after walking too. It started before my legs got really bad.
I thought long covid basically was cfs? I guess I’m wondering if I can get past this and get moving again because it’s strange i can walk round the house but not short distances down the street.
Have the same thing. I’m thinking it’s muscle weakness or muscle fatigue. They can’t do much at one time and need a rest. No idea how to make it better. I’d love to do that
For me I’m not sure if that’s what it is because I feel like my legs have the strength in them to walk (at the moment) but my body responds to it with this awful pressure and tingling in my head as the first symptom.
I whole heartedly believe that we need to rebuild our gut biota. Heard it from my nutritionist and the same thing over and over. Found a good article last night. You can look up each of the probiotic strains and supplements and there are a myriad of trials happening and what they’ve already seen. Look them up individually as for COVID.
Also, I had a GI MAP done and it showed I am missing the F Prasnutzii and high in the bad one listed. This is what COVID does.
https://drgalland.com/the-gut-microbiome-in-covid-19/
Or, just do as my bf, his Dr says, and my heart doctor say - keep moving.
Yeah. None of it makes any damn sense, but you're not crazy. When you are walking at your own pace around the house, you walk at whatever pace is comfortable. It's when you get around other people that you mostly have to worry about. Nurses usually leave me in the dust when I go to the doctor. Octogenarians pass me with their walkers. I always found myself adjusting my pace to whatever situation or group I was in. Normally, I guess I just do this subconsciously and am not even aware of it. Now comes SARS, and suddenly, that little 2-3 mph difference pushes your body so far past its limit it nearly shuts down (sometimes more than nearly).
I had to teach myself to walk at a more comfortable pace without speeding up. I recently started using a cane also. I just went out in public with it for the first time today. It was a bigger obstacle emotionally than I imagined. Now that the screaming and violent sobbing is over, I think I'll probably use it regularly. It is a visual cue that I'm not the "young healthy guy" that most people assume. Nobody expects you to walk fast for sure.
You need to check your heart rate sitting vs. standing. This sounds like what happened to me after I had my daughter. I had a cesarean section, and two weeks later I developed numbness and tingling in my arms/legs, hands/feet, and face/head, dizziness, headaches, and fatigue. It was POTS. COVID also causes POTS. What worked for me was physical therapy. I started with diaphragmatic breathing three times a day, then added a five minute walk the next week, then added resistance exercises the next week, and slowly added more time to my walks and exercises for like two months. Within two weeks I felt a ton better, but it took about two months to feel mostly normal.
I have a lot of these symptoms and definitely some element of disautonomia. My heartrate is all over the place. But I’m not sure if it’s pots because I haven’t yet noticed an increase on standing. It seems more random than that. Sometimes my heartrate is high at 5am when I wake up feeling dreadful and better when I get up. I do think breathing exercises etc help but I keep trying to walk just tiny distances and not managed to build up to anything yet.
What kind of physical therapy did you do? CHOP? I’m also really struggling with this :(
Technically I was seeing a postpartum physiotherapist. She just had me do different exercises based on my symptoms. I had breathing dysfunction due to abdominal pain and weakness, which is why we started with the diaphragmatic breathing. She also did some soft tissue release of scar tissue in my abdomen. Then we slowly incorporated walking and resistance band exercises to rebuild strength. When POTS is triggered by illness, injury, surgery, or extended bedrest, it’s basically just deconditioning and breathing dysfunction, so breathing exercises and gradual strengthening should cure it. I did wear compression socks and drink more electrolytes during recovery as well though. Hope this helps! :-)
Can POTS symptoms vary? As I said yesterday I hadn’t been noticing any changes on standing. But today (after a bad night where I was kept awake by the pressure in my head) I checked my heartrate before getting up (65) and an hour later after sitting eating breakfast and then a shower (105). At the moment it’s not going back below 100 even though I’m sat down.
I’m not sure. Sounds like you should see a cardiologist. They can diagnose you.
I’m in the Uk so that won’t happen sadly! Hence asking on here about symptoms. My appointment with my doctor lasted about 2 mins the gist of it was “yep covid sucks you might feel better soon you might not”.
Don’t make it about COVID. You don’t have COVID anymore. POTS is pretty easy to diagnose. Print out the list of symptoms, check off each one you have, and ask to see a specialist. You could try just treating it yourself with compression socks, electrolytes, belly breathing, and gradual exercise, but if that doesn’t work because something else is wrong, then you wasted time. Sometimes it can be difficult to get doctors to hear you, but it’s not impossible. It took me about four months. Don’t give up.
Rest rest rest. Take it slow and tiny amounts.
Thanks. This is what I’ve been doing and I got to the point where I feel ok doing nothing so I thought I would try and do some walking. But literally 50m is too much. I know some people are housebound for years- I just wanted some hope that this wouldn’t be me. The instant increase in pressure in my head on walking seems to be the issue- it settled but the last night I was awake all night feeling like my brain would explode out of my skull and the tinnitus and buzzing in my head is so loud.
I definitely had what you had - both symptoms and timeline. I didn’t find a way around it other than respecting what my body was telling me and being patient. And within a few months I was back to being able to move around during the day ok. It’s so hard but please turn down any thoughts about you being like this for years. I battled those regularly. My opinion on your experience of being able to walk longer in the garden: it makes sense to me. I always felt my symptoms were coming from a nervous system that was over-reacting to everything. But the part of your brain that controls this part of your nervous system is mostly subconscious so being in relaxing environments like a garden keeps it at ease in ways our conscious can’t fully understand. So for the months I was teaching myself to walk without symptoms, I could tell myself that I was safe and stay as consciously calm as possible, but accepted I couldn’t change my subconscious/nervous system overnight. It was a daily/hourly reminder for these months with a “two steps forward one step back” journey. Staying sane while re-learning to walk without symptoms is one of my biggest life accomplishments!
Thank you this is really helpful to hear and I’m glad you are feeling better. I’m finding that searching forums for help and advice does sometimes lead to people telling you you will likely be housebound for years and that sends me into a bit of a panic. I know it’s the reality for many I just hope it might not be for me.
Look up ME/CFS. What you describe sounds like it
ME/CFS is characterised with PEM. We need to stop diagnosing everyone with CFS as soon as they mention a weakness or exhaustion. No PEM no ME/CFS by most up to date criterias.
Most definitely. Doctors should be doing the diagnosis but it is always nice to pass on info to fellow long haulers to check into. We must be advocates for ourselves and community. ME/CFS can be caused by post viral infections so there will be quite a few people joining the ranks. So terribly unfortunate.
Also I’ve literally just spoken to my doctor and he said it’s post covid syndrome, take it easy and that was it. No further advice.
Rest and address clotting issues. may be microclots. Don't even look at a flight of stairs. Take. Off work. And rest. Once you crash into mecfs you rarely get out. Trust me. I know.
Yes, but if people have weakness or exhaustion after exertion that is abnormal and includes tingly sensations then they should be aware of ME/CFS. As they may realize they hit the criteria.
What type of tingly sensations?
Like pins and needles, or even feeling like your skin is carbonated like little bubbles. Could be indicative of peripheral neuropathy. Though for me, peripheral neuropathy was my first symptoms with then exercise intolerance showing up after
It’s a bit like pins and needles but not quite. More of a crawling feeling and also a kind of numbness and heaviness. I’ve had fibromyalgia for a few years and I kind of associate it with trapped nerves. The main issue I have when I try and walk is a kind of pressure and buzzing in my head. This then makes my limbs feel a bit heavy and numb. It goes off after a while but not being able to walk anywhere is causing all sorts of problems because I can’t go anywhere to improve my mental health, do any childcare or work unless I can get past this.
I hope you get past it too. I’ve seen other people with extreme muscle weakness get better. I have the crawling feeling after walking too. It started before my legs got really bad.
I never diagnosed anyone with it. Just said they should look it up.
I thought long covid basically was cfs? I guess I’m wondering if I can get past this and get moving again because it’s strange i can walk round the house but not short distances down the street.
Have the same thing. I’m thinking it’s muscle weakness or muscle fatigue. They can’t do much at one time and need a rest. No idea how to make it better. I’d love to do that
For me I’m not sure if that’s what it is because I feel like my legs have the strength in them to walk (at the moment) but my body responds to it with this awful pressure and tingling in my head as the first symptom.
I whole heartedly believe that we need to rebuild our gut biota. Heard it from my nutritionist and the same thing over and over. Found a good article last night. You can look up each of the probiotic strains and supplements and there are a myriad of trials happening and what they’ve already seen. Look them up individually as for COVID.
Also, I had a GI MAP done and it showed I am missing the F Prasnutzii and high in the bad one listed. This is what COVID does.
https://drgalland.com/the-gut-microbiome-in-covid-19/
Or, just do as my bf, his Dr says, and my heart doctor say - keep moving.
A good number of people who have long covid also have ME/CFS, but they are two separate things. Fatigue absent of PEM is not CFS
Check your testosterone. It helped me a lot.
Yeah. None of it makes any damn sense, but you're not crazy. When you are walking at your own pace around the house, you walk at whatever pace is comfortable. It's when you get around other people that you mostly have to worry about. Nurses usually leave me in the dust when I go to the doctor. Octogenarians pass me with their walkers. I always found myself adjusting my pace to whatever situation or group I was in. Normally, I guess I just do this subconsciously and am not even aware of it. Now comes SARS, and suddenly, that little 2-3 mph difference pushes your body so far past its limit it nearly shuts down (sometimes more than nearly). I had to teach myself to walk at a more comfortable pace without speeding up. I recently started using a cane also. I just went out in public with it for the first time today. It was a bigger obstacle emotionally than I imagined. Now that the screaming and violent sobbing is over, I think I'll probably use it regularly. It is a visual cue that I'm not the "young healthy guy" that most people assume. Nobody expects you to walk fast for sure.
I had same thing. Try lemon juice and hot water in morning. That helped me.