I have just started my annual surfing holiday and have completed my first day in the waves. I generally consider myself as fairly fit but am now lying on the sofa in my surf apartment in a great deal of pain. Back,hips, knees, feet, neck....there isn’t one part of my body that’s not in pain. I got tired very early on in the surf session but pushed on (as waves were good and I don’t like to miss out) For those that are further down the line to me could this be because of my ET ?
Cheers.
Hi Threelions - many people on this site have varying levels of fatigue, joint pain or other things as a result of their MPN and/or the medication. I've been taking hydroxyurea for just over a year, and have had ET (diagnosed) for a year or so before that. I play racquet sports, run, do strength exercises, and hike, and haven't had any issues doing any of that. (Well, other than I can't go as fast or lift as much as I could 20 years ago!). The only issues I really have are a lot of bruising, but that's because of the clopidogrel and low-dose aspirin I take. I guess your current surfing pain could be a result of your condition, but maybe you just really "went for it" on your first day and are now paying the price - ha ha?
Hi, Thanks so much for responding. I guess it must be difficult and frustrating knowing what is a symptom of the illness and what is a quite normal bodily reaction to something we do.
Yes, my fitness has changed. If I spend more than an hour in the garden I'll pay for it for several days after, but it is worth it sometimes. I am so jealous of you being out in the sun. I have ET and have been on hydroxy for almost a year and have not found a sunblock that works well enough for me to do anything outside unless the sun is setting. My neighbors call me "Vampire Woman" because I will be outside at night with lights on working in garden.
If you really enjoy it do it then factor in down time.
Hi,
Thank you for the reply. As a newly diagnosed “newbie” should I be worried by being in the sun too much (even with sun cream) ?
PS I did find the vampire reference 😀
pretty sure it's the medications that we take to combat the MPN's but my brain cells are not cooperating today, so don't quote me. I take hydroxyurea and 24 hrs after my first dose I had 4 Actinic Keratoses pop up on my face which then had to be burned off. I wear a 110 spf on my face but still burn even with hat, tinted windows & drapes drawn in living room. I'm a delicate flower now!
Hey Three Lions... 
Where are the waves? Sounds sublime to me... been many years since I went for a surf... and these days... I am far more inclined to cycle.
In any event, one word, 'FATIGUE'. Most of us w/ an MPN of any variety can all suffer from Fatigue, to one extreme or the other...
As I recall, getting out back can be quite a work out if its been a while since you've been surfing too... knowing where the sets arrive always helps of course...
it's one thing being generally fit, and quite another to be Surf-Fit, as I recall. Same applies to cycling. Whenever I am forced into a hiatus of any real length of time, (3-4 weeks+), it almost always requires a few rides to reawaken my muscle memory.
Plus, and also not forgetting what med's you might be on... (?)
HU for me was quite a terrible and at times horrific experience. Mental fugue, disturbing forgetfulness, and of course extreme fatigue, were my constant companions.
However, if your aches and pains continue to alarm you then best you see your specialist, and ask their medically trained opinion.
My platelets have always really been quite high, (c. 700s-900s), and I am Post ET/MF. However, I find that if I can maintain my exercise consistency, I am usually in a good place... but it is a constant battle to maintain my fitness, and my diet at times... and that can also play a large role too...
Best wishes and enjoy those waves... naturally, I am most envious of course...
Steve
Thanks so much for the insight. I’m surfing on St Ouens and Plemont bays in Jersey. You’re right I should remember that that “surf fitness” is a notch up but the aches, pains & tiredness have been a real struggle this week, which I’ve not had to endure in previous years. Meds are peg interferon.
Whilst aware of my recent diagnosis I also think I’m a bit in “denial” and believe that if I carry on as “normal “ I’ll be ok. I am finding it confusing as to if the symptoms are related to the illness or if it’s just because I’m a year older (51) 😀
Thanks again for your insight, it’s priceless getting info from those who are more MPN experienced than I👍
I was diagnosed in Oct last year, but seems I’ve had ET for 5yrs. I’ve always been pretty fit and I still work out about 5 times a week - weights, bike classes, yoga. If I get tired, there’s usually a good reason and any other ‘normal’ person would be tired too. I still scuba dive, hike and waterski. And I’m 63.
Maybe you were just normally tired after the big surf session?
Thank you so much for your response.
I think, without realising it, I may be pushing myself more in a kind of “denial” of my diagnosis. I m sure part of my sub conscious thought process is “I’m perfectly OK” and, like you say, anyone feels tired and achy when you push yourself physically. Great to hear that you waterski(amongst other things) and very encouraging to hear you, like others, don’t let the illness affect your training👍
It threw me mentally fit a while as I’m so much fitter and I thought, healthier, than most women my age. I drank too much wine fur a while - then mentally slapped myself across the chops and got back to living life well. I think the secret is not to let this define you - you are not your disease.
I’m afraid to say in my cause yes- a definite impact on fitness, I believe for a number of reasons I suffered greatly from fatigue before diagnosis. Proof it’s not in my head, then there are the meds and the affect they have on you blood count. My heamoglobin hovers around 105.
Unfortunately for you you are in pain. I don’t get that.
The best advice I read was to keep your energy for things you love to do and find short cuts for all the others . Good luck
Thanks for the insight & love the advice about energy saving for the things you love👍
Yes!
😕 Thanks for your honesty. Really appreciate it, even if I had secretly hoped that it might not affect my fitness.
Hi man, I have had et for over twenty years and used to ride mountain bike trials and do all sorts of extreme sports ,at first say the first ten years I was relatively the same although a little more tired and recovery was longer ,but my fatigue has got slowly worse as time has gone on . I am in no way not able to do stuff still just not for as long but my HG is always just around the hundred or less mark so it could be that on top.
Don't let it stop you surfing man just take it as it comes and a good mental attitude towards it also helps I have found.
Take it easy
Nick
Thanks Nick, I’m getting that you’re a really positive person👍 Really appreciate your insight (having lived for some time with the condition) I too am under Guys so reckon I’d recognise you if I saw you there😀 .
I most definitely found pegs to be the major problem for me . While I was on pegs the aches and pains in my body was torture not to mention the itching , I had to give up yoga because of it . I have now been of pegs for two months and I feel like the old me again the relief is amazing. So yes I do believe it’s the medication . I have ET and my platelets have gone up since not taking the pegs but I will try another medication and see what happens.
Recently Diagnosed 
Newly Diagnosed with ET 
Recently diagnosed
Recently diagnosed 
Diagnosed with ET
