Symptom flare up after working out (?!) advice please

[DocAJB]

Hi everyone,

I've had PA symptoms for about ten years. Was diagnosed two years ago and have injections from GP once every 2 months but supplement with my own when feeling low. I'm 36 years old and female. Have a busy life, work full time with a young child.

My question is about exercise. If I exert myself even a little bit above walking at a stead pace I get chronic fatigue symptoms, that I used to get pre treatment. For example, exhaustion, low motivation, muscle pain and spasms. B12 shots don't seem to make this better.

A bit of context, I have fallen into bad exercise and eating habits. Kind of because of this a little bit. I used to love working out, and still really want to! But, kinda just stopped because these post exertion symptoms are somewhat debilitating, in that just want to rest and stay in bed. I have also, for a year, been eating too many sweets and drank alcohol - but attempting to cut down on this.

The point I'm making is I know this lifestyle factor will also influence the symptoms and that I need to take control of this. But wondered if anyone had any insight into of PA might be at play as well?

My mum says I should go back to gp. Just a bid jaded after how many times it took initially to get diagnosed (7 years), they don't seem to take me seriously. The one who did and discovered my PA has retired unfortunately.

Thanks everyone for your thoughts!

[Nackapan]

It a matter of management. My youngest daughter is in hef early 3os.

Has found pilates is more suited for her yoga can be good .

Swimming?

She given up alcohol for some years now.

Also eats far more 'cleanly ' than me.

I find i have to

Pace

Prioritise

Which is very frustrating 😕

But is progress .

PA effects us daily .

I think houf mum is wise to suggest G.p.

They can do some blood tests to make sure nothing else going on

Also to check iron levels ect .

Hope you make a plan as to a way forward

[DocAJB in reply to Nackapan]

Thanks so much for your reply 😁. I guess the main takeaway is that even with regular injections the body is never fully "well". As you say, this is something for me to learn to manage.

You're advice matches on approach I've been considering; a management of the post exertion fatigue where I give up alcohol and high sugar food, eat well, and do yoga daily - building up time I do it. All as a way to build up my exercise functioning.

[Narwhal10]

I agree with Nackapan. PA/B12D can be regarded as an Energy Limiting Illness. So, if you are a busy working mum and wish to exercise consider cutting back on housework. Unfortunately, we are not Superman, nor Superwoman nor Super-gender neutral nor Super-gender fluid.

[Cornwaller]

I find supplements like taurine helpful with post exercise fatigue but have to carefully limit full cardio exercise.

[Litatamon]

I was diagnosed in 2019. At first if I chose to exercise in a harder way, that would be it - I would be down for the count for at least three days. I would often still do it though & just except my consequences.

Now is not back to normal but a heck of a lot different. I can leave approximately 24 to 36 hours between any form of intensive decisions & make out okay.

--------

A bit off topic but I have found exercise on the day of injection can take the edge off as well. I didn't feel this in the beginning but in the last couple of years I have found that an injection can make me feel a bit edgy right afterwards. And exercise right after the injection makes that hardly come at all.

[JesusMercy60]

hello DocAJB,

I was reading your post on exercising and hope your doing well now with it. I am entering my 4th month tomorrow with EOD injections and cofactors, if I may ask I was wondering if you had neurological symptoms from your deficiency and did they go away? I had been undiagnosed for 7 years and now have finally found out PA and b12D, I was very active with exercise and I am afraid of when I should start. I feel I'm still new with all of this still. I was going on walks at first then I was afraid of using up too much b12 and having my symptoms come back. they are not gone yet but way better than before.

thank you for your comments.

Rosina