MPN Voice

GYM and ET

Good Afternoon All,

I have not posted in a while I'm ET JAK2 Positive was diagnosed in 2016 following a Stroke, ( have not worked Since) but I am fed up and have just signed up to the gym to try and battle the rotten Fatigue that I still suffer most days, also Anxiety, I have put on over a stone in weight and need to try and get fit, does anyone have any suggestions that could help me at the gym, TIA

Tina

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Hi Tina I have ET too and use the gym 3 or 4 times a week. It definitely helps me feel better! I would suggest a personal trainer to start with to get you on the right track

Good luck

Michael

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Thankyou, yes I am booked with a personal trainer on Thursday, is there anything that you are limited too, not sure whether I should push too hard to start with or whether my body will allow it, bit nervous tbh!

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Your body with struggle to push hard to start with as you will probably be more breathless than normal. Be sure to explain your condition to your PT.

Don’t be nervous try and enjoy it! You will feel a whole lot better mentally and physically.

Having said that, check with your doctor first! I’m 60 this year and feel good considering!

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Thankyou

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Good luck Tina! Wouldn’t it be great if doctors prescribed gym membership instead of anti depressants?

Let us know how you get on

Jaynie x

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Yes wouldn't it! Well I have just booked a LBT class for tomorrow 😯

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I find swimming helps too, as well as going to the gym x

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The most important thing is to arrange a programe that is Taylor made for you.

This should be for most strength and small repetitions to help your cardiac fitness.

Try some active walking too.

In England, you can have a free twelve week programme done by the YMCA try online.

Little changes and keep going .

Look at food changes and perhaps a support group.

Be kind to yourself, mindfulness and a salt lamp is good too.

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Go for it! I’ve been ‘gyming’ since last August. Although I’ve been diagnosed PV for 10+ years and suffered blood clots in my groin and lungs, it was the borderline type 2 diabetes that sent me to the gym. Now there’s a medical condition which I might be able to have some control over!!

I’m no athlete by any means. But I walk on the treadmill, cycle, row and use the cross trainer.

I’m fitter, thinner and have seen a reduction in hydroxycarbamide which may or may not be related.

Get the proper advice, put on those trainers and give it a go.

Good luck :-)

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Hi Tina. I've had ET for 14 years and on Hydroxy. I go to the gym 3/4 times per week plus swim & walk daily. I will also cycle 50 mile rides when the weather improves (I'm approaching 69 yrs) never felt fitter!

Definitely "Exercise to Energise" is the way to go. It will be tough at first but well worth the effort, a little but often will get you there. Good luck!!

Peter

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Gosh I’m so impressed I’ve been on hyroxicarbomide 2 and 1/2 years.

I’ve had to decrease my regime. I’m on 17 tablets a week. Currently my arms feel very weak.

What is your dose?

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17-19 per week (depending on blood counts) plus aspirin.

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PeterET,

What an inspiration you are! You make me feel so lazy.

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Thankyou all for the support and kind words! Well I managed to get through my first class without collapsing😂although difficult in parts but just took breathers, I did enjoy it so have booked an aqua class for this evening and have a personal trainer on Thursday to put me on the right track xx

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Hi Tina6,

I'm 68 and ET/PV for the last 6 or possibly 14 yrs. I try to walk or treadmill or cycle or do light weights every day for at least 30 minutes and find that I feel much better and almost normal on most days.

I think any type of exercise you can do will make you feel better just keep up with it.

A personal trainer would be wonderful, swimming would also be great exercise.

Just keep moving and have fun doing it.

Best of luck to you.

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Thankyou! Hope my body allows me too x

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Just keep up the faith and keep working at it and you will do very well

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Hi, I was going to the gym at least 4 times a week. Even before diagnosis I was struggling. I’ve had to reduce my workouts by approximately 25%

I force myself to go. However, after I actually feel” normal.”

I currently do two and 1/ hours of yoga one 1/2 mile swim and a 4 mile brisk walk.

I sound energetic, fear not. I don’t do housework any more. My workouts are about all I can cope with.

Recently, I’m finding my body is getting weaker though despite my regime. Especially my arms. I’d love to know if this is because of an increase in my meds.

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Im yet to find out if it improves my condition ie energy levels just fed up with feeling so tired and really need to lose weight as I have gained over a stone since being diagnosed! Fingers crossed things improve x

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Yes Tina6, I too have put on weight. I put it down to my inactivity.

When fatigued I still eat. I know though when I do manage to lose weight I feel good. Then realise that maybe subconsciously I suffer low moods because of ET.

Keep going, even the social life at my gym has helped me.

Good luck

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Thankyou I will do my best !

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Hi Tina

I joined a gym in January 2018. Because of other health issues, I am only able to swim, no cardio or weights. I swim every day for 1, sometimes an hour after work too and I feel great! They say a work out is the best thing you can do for fatigue. I've surprised myself that I've stuck to a routine. I'm nearly 3 months in and although I've not lost a huge amount of weight, I have lost inches and have noticed a significant difference in my clothes.

Maybe you could speak to a trainer at the gym and ask him to prepare a programme specifically suited for your needs. I would also let them know of your condition too.

Good luck and enjoy!

Angela

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Hi everyone! I have just read this thread and I have remembered this very recent research article on "Associations between Fatigue, Physical Activity, and Quality of Life in Patients with Myeloproliferative Neoplasms" (2018): onlinelibrary.wiley.com/doi...

Thank you all very much for this wonderful and supportive forum.

Best wishes,

Patricia (largodomingo1981)

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