Exercise crashes

[chonkytonk]

Hi all, curious if anyone has experienced a worsening of symptoms following strenuous cardio exercise? This is typically viewed as PEM (post-extertional malaise) in the ME/CFS community.

In the last couple months I've had two specific times when I had a big increase in fatigue and general feelings of unwellness after doing some high-intensity cardio. The symptoms increased 12-24 hours after the exercise. Prior to those crashes, I was doing pretty well symptom wise.

I'm not sure if this is coincidental or truly being caused by the exercise, as certain forms of exercise haven't led to the same result. Has anyone experienced these crashes from a B12 deficiency? Did you see them improve as you continued treating your deficiency?

I'm on EOD Hydroxy injections, currently 2 months into treatment with good levels on cofactors. Original B12 level was 175 pg/ml at time of diagnosis.

[ClaireWF1346]

Not sure if it's helpful at all but I visited the Cambridge specialist last week and he advised in month one of EOD to only do brisk walks. Into month 2, he advised something like couch to 5k but definitely nothing longer than a 5k run as it will deplete iron stores (not sure if you're on iron too?). I haven't had the energy to do more than brisk walking for a while but maybe it's depleting your B12? Maybe it's just too much, too soon? What type of exercise was it? It's so frustrating to not be active...but I am going to take things very slowly in my second month. Wishing you the best!

[chonkytonk in reply to ClaireWF1346]

Thanks for your reply! I've been trying to take it slow as well with walking and running at various intensities. The walking seems to be no problem, but I have experienced a worsening with higher intensity running (30 minutes around 170 bpm heart rate)

[charks in reply to chonkytonk]

I have no problems with longs walks on flat ground but after strenuous hill walking I do feel the need for extra B12. I suppose hill walking could be called cardio - things like the steps up Malham Cove definitely get my heart pumping.

But I think this is 'normal' for those of us with B12D/PA. Our bodies don't have a store of B12 to draw on.

[Loupharm]

hi chonkytonk, I think your ferritin is still low - especially now you are supplementing b12-ideally needs to be above 100.

Your body is working hard to create new healthier blood cells and this takes time and energy to do that. Be gentle with yourself, feed yourself well and perhaps give it a month or too more and slowly build up to strenuous stuff after that

I’m 13 months post treatment now (post Cambridge) and I feel a lot better but I’m definitely not up to strenuous exercise yet!

Wishing you well

[chonkytonk in reply to Loupharm]

Thanks for your insight! I’m going to ask my neurologist about the ferritin today, otherwise I’ll plan to start doing some heme supplementation.

Lower intensity workouts seem to be okay for me. I appreciate your encouragement!

[Suzibelle]

Hi chonkytonk. Yes. I've crashed after exertion in the gym, the pool and walking. It has improved a little since I was first diagnosed but I've had to learn to pace myself, as there is a very fine line between being okay or over-doing it and paying the price afterwards.

[chonkytonk in reply to Suzibelle]

Thank you for sharing your story! Did you find that your crashes were delayed after the exercise? Like 12-24+ hours? Glad to hear you feel like you’re improving.

[Suzibelle in reply to chonkytonk]

The timing of the crashes depends on how hard I've pushed it. There were occasions at the gym where I stopped mid-set (I'm talking weights here), picked up my gear and made it to the car just in time to sit there and be unable to move for 15 minutes until I got enough energy back to make the short trip home. Walking to far/too fast, similar. In the pool it's different, it would hit anything from a few hours to the next day - I quickly discovered that if I wanted to do 1500 metres (30 laps) in the pool I'd have to do it on a Saturday morning because I'd crash in the afternoon and be no good for much for the following 24 hours. 1000m (20 laps) I could do on Tuesday night and still manage to be functional at work the next day. Used to be able to do 1500m three times a week while doing 12 hour days for two weeks at a stretch on remote mine sites without a problem... I'm a haemachromatosis carrier and, while I don't need treatment my iron levels are always high so it's not that and must be the PA.

[phoenix80]

I had to stop going to my exercise classes, they were high intensity hour long classes, with my heart rate generally around 150-160 for the majority of it. I'd start feeling unwell a few hours after the class and would last for a day or so and I often couldn't get out of bed. My iron is also low so not sure if it was that or the B12. Rubbish when something that should be good for you makes you feel so unwell isn't it

[chonkytonk in reply to phoenix80]

Just curious, did you feel good during the exercise itself? This is something people often talk about in relation to CFS. So I’m just trying to understand any overlap with B12.

[phoenix80 in reply to chonkytonk]

Yes but I absolutely love the class - it was body combat that I did, and I used to do martial arts years ago, so would enjoy it so much I didn't feel the tiredness during. Sometimes felt a little light headed but overall always felt good

[brenanddave]

Hi chonkytonk From what I understand the reason this is happening is because you will be using up all the b12 you are putting into yourself with these exercises. You should be using this b12 to help heal your neuropathy and look at slowly building your exercise once you have gotten that sorted. I know you are probably eager to get back to what you used to be able to do but we need to be patient and allow the healing to take place. This is not a quick process I'm afraid and your body is letting you know. Take care x

[chonkytonk in reply to brenanddave]

Thank you for your kind words of encouragement. I’ll keep taking it slow. ❤️

[BeachArt]

I am 7½ years into my journey. At first I thought there was something seriously wrong with me.....by that I meant life threatening. I was becoming a zombie, and had all manners of symptoms. I was given a trial of injections, after requesting them. My request was made on my symptoms, my blood work, and my family history of PA. I felt an improvement after loading doses, so I bit the bullet and decided that if I was going to continue to improve I had to take my health into my own hands and SI. It was, like most of our journeys, a rollercoaster. I would improve, then have a set back. Improve again, then another setback. Some times I felt like it was one step forward and two steps back. But I learnt what caused my setbacks: viruses and other illnesses (not much we can do about those), alcohol, moderate or high intensity cardio exercise, and pushing myself to do too much on my better days (big problem for most people with chronic health issues). So I listened to my body, and let it heal at its own rate (with the help of EOD injections). I avoided alcohol for a couple of years. I didn't push myself too much, and avoided moderate to high intensity cardio. It took almost two years to get back to the gym, where I would do weight & strength training, and no cardio. 7½ years in I am probably the healthiest I have ever been. I work 4 days a week, in which I walk about 5 miles each of those days. I go to the gym 2 or 3 times a week (still weight & strength training). I can drink alcohol on high days and holidays without any issues. I went to London last weekend, walked 11 miles in a day, got drunk, danced, and had a fantastic time. I had a couple of extra injections the following week, and I was all good. BUT I still cannot do moderate or high intensity cardio exercise without it depleting my B12 stores, and causing me to have a setback. I am so grateful to be where I am today, but I still have those limitations.

[chonkytonk in reply to BeachArt]

You replied to another post of mine, and I always deeply appreciate your thoughtfulness and encouragement. I'm thinking I may need to lay off the high intensity cardio and just try some strength training for awhile to see where I net out.

I'm curious, in terms of your setbacks. Did you find that the relapse in symptoms occurred during exercise, or was there a delay?

Thanks you!

[BeachArt in reply to chonkytonk]

I would sometimes get the start of a numb right foot during exercise, which was my cue to stop. But mostly it was a delayed response, just like PEM. The same with alcohol, that was always a delayed response, of a day or two, too.

I noticed you said that you are only 2 months into treatment. If I were you I would totally lay off cardio for a while. I could only manage walking at 2 months into treatment.

[chonkytonk in reply to BeachArt]

Great advice. Thank you.