Has anyone with exercise intolerance got to the bottom of its cause?

[SpringSnowdrop]

Mumsnet is my last resort after seeing various doctors as just hoping someone somewhere knows of an equally strange and difficult exercise intolerance or has ideas. I used to be a keen runner and win 16 mile races and long to be active again as it holds my family back ; I also developed food intolerances along with fatigue and have IBS but blood tests are always encouraging (apart from one suggesting Lyme when tested in Germany but was negative when tested for it again with NHS).

I basically shut down if I do moderate exercise or activity - it’s hard to describe but I can go from feeling normal and busy in the morning to being unable to do anything or tolerate noise and just want to lie down if I have tried to go on a walk or mow the lawn. (Then strangely If I manage to sleep for 20mins it is like a full reboot and I wake up and manage low level activity happily again. )

To help explain how debilitating it can be once an accident happened next to me my brain was crying out to stop but I’d overdone things by walking that morning. I wanted to lift my body off the bed and just couldn’t react as such a heaviness comes over me, like being in a sleep or paralysed.
I don’t have high hopes I’ll ever find out what this is as saw a wonderful doctor who is experienced in chronic fatigue but he didn’t think it was that .

Thanks for even reading and I probably will just never know and will continue to carefully manage what I do. But I would give so much to have my energy back and even do sport with our children one day.

If it only happens during exercise I would guess it has to be a reaction to some hormone your body produces during exercise.

So I have histamine intolerance and some people find the condition worse when they exercise as your body produces histamine during exercise. Though don’t think your symptoms fit for it. But some other hormone..? So off the top of my head cortisol, adrenaline??

I’m just guessing. Sounds like it must affect you a lot though.

I do think Lyme disease is hard to accurately test for btw? That you can get false negatives.

Have they ruled out Crohn’s disease?

I had a similar reaction to vigorous activity...it was related to hypothyroid. It took ages to get a diagnosis and was one symptom among others. If you have been tested I imagine your thyroid levels have been checked. I hope you find out what it is. Good luck

I’m grateful for these kind replies, thank you and it’s cheering to have new eyes and ideas on it.
My thyroid was tested years ago when this started but the idea it’s something getting produced during exercise is genius as makes so much sense . At the back of my mind i wonder if it is indeed Lyme as that could fit too but hadn’t thought of hormones produced during exercise as something to think about.
Thank you all very much . My doctor did offer to refer me to a neurologist but I’d had so many fruitless tests and didn’t understand what that would explore but it does seem a very curious (and debilitating thing.

notaregualrpenguin you have given me a valuable new lead actually as I never knew about histamine intolerance and going to look into it- not least as I also have out of character anxiety ,and also gluten intolerance and it might be possible.

Thank you all so much; you are amazing

and also gluten intolerance and it might be possible.

So you’ve had the coeliac antibody blood test?

Really hope you get it sorted. It’s so frustrating to have a chronic, rare condition with no answers. I was pushed away by many doctors before finding one who listened and had answers.

I was tested for Coeliac disease but was clear. A naturopath found I have non coeliac gluten sensitivity and also react to rice and corn (they make me very tired and irritable!) which was quite a break through but hasn’t helped the exercise issue

The lymes test used by the NHS has a relatively high rate of false negative results (I think it accurate detects only about 60% of case) so this is definitely something to chase up, false positives are much less likely. If the NHS won't look further (they often won't after a negative result) you may want to look at going private for diagnosis if at all possible.

Thanks Wave. One of our children has had it (tested positive on nhs and was treated privately) and I haven’t ruled it out, I just find it hard to keep pushing for an answer when to anyone who sees me I just look so normal and well. (Id need to summon a lot more energy to face re-examining the possibility too as found Lyme a nightmare to understand when doctors don’t seem to have much agreement with each other on its diagnosis / treatment and it’s a very difficult illness I think. But I think one day I will when have a bit more space and time to do so). Thank you x

Wow you are having a twisty pathed time of it.

It’s not too bad as I was a lot worse a couple of years ago and I am fierce about managing my energy so that I cope. But I would just love so much to know what really is behind it once and for all.

I forgot to reply to the crohns question Penguin but yes, i think I’d know as had a colonoscopy which I imagine would show it

I do think I am a good step further thanks to you all as watching this video of antihistamines and it sounds so similar to my issues and not only that but it mentions Lyme as a possible factor.
I keep losing my focus before have heard the whole video but I have a feeling it’s quite relevant and useful and I’m excited to at least have a new possibility to explain what has happened to me . Thank you all again
m.youtube.com/watch?v=P1zgAK1EVRE

Have they tested for myasthenia gravis?

That is very interesting beautifulgirls as I hadn’t heard of it and I am really grateful to know of anything it could be. I have just looked it up and at the moment thInk histamine intolerance ( possibly linked to Lyme ) could well be worth checking so this thread has helped no end. I luckily don’t have the eye related symptoms commonly found for myasthenia gravis but very grateful to know about it too

Have you had your heart checked?

No real ideas straight off could be a lot of things

I do have M.E since 2008 and became severe with it in 2010 before 3 other neuro problems joined the party and floored me.

I know it's not exactly what you are asking about but because before my total collapse from all 4 conditions, I was advised to pace myself

Pacing’ is about balancing activity and rest to help
manage M.E. www.actionforme.org.uk/uploads/pdfs/pacing-for-people-with-me-booklet.pdf

In case you do or for others who may be given this diagnosis or CFS, Graded Exercise Therapy (where you keep increasing activity, kinda mind over matter) aka GET and CBT are dangerous and the fight is on to get them struck out, they are not treatments.

This is a multisystemic illness, not a psychiatric one as some would have you believe. M.E is recognised by the W, H, O organisation since 1969 as a neurological condition.

Also generally helpful is how to avoid PEM (post-exertional malaise) which is the defining symptom of M.E. "Post-exertional malaise (PEM), or post-exertional symptom exacerbation, describes a delayed and significant exacerbation of ME/CFS symptoms that always follows physical activity and often follows cognitive activity. Here is the PEM avoidance toolkit www.omf.ngo/wp-content/uploads/2018/03/PEM-Avoidance-Toolkit-2018.pdf

PEM is a highly characteristic clinical and diagnostic feature of ME/CFS. In some respects, PEM is an illness within an illness."
www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/

Maybe something there might be useful to you even generally