Exercise?

In July joprv asked who is able to exercise ? To those who replied how are you doing now? In the last 2 years I have suffered with feet pain,pulled muscles,nausea,feeling pathetic,all with the aim of getting fitter.I now referee up to 3 football matches a week and for a short time feel really great,but eventually the fatigue hits me like a steam train! how do you cope with the highs and lows of excercising?

6 Replies

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  • I find exercise of real benefit particularly with regards to my fatigue, energy and general well being. I always feel energised after a workout.

    Motivating myself can sometimes be difficult but I never regret a visit to the gym or a bike run.

    I have experienced intermittent back, hip and knee pain and I'm never really sure whether it is caused by my condition or my physical activity as often the trigger isn't obvious. It may mean I have to take a few weeks off or slow down a little but it wouldn't put me off exercise altogether.

  • I have to stick to gentle exercise, mostly walking and as soon as I start to walk uphill no matter now gentle the incline, I feel it. However I realise it is important to keep muscles working and prefer my exercise to be outdoors rather than trying to work out as you also have the benefit of fresh air in your lungs. I also get the back knee and hip pain which comes on without warning and lasts sometimes as long as two weeks. I have PV. I had this before I got my diagnosis so I feel it is part of the condition. I am on hydroxycarbamide. I don't feel that aerobic exercise is helpful in my condition as it it supposed to promote the production of red blood cells (check this as I am only quoting information I have read). Because my problem is over-production of red blood cells it seems sensible to exercise less vigorously but all the same regularly. The amount of exercise one can manage could also be related to what age sufferers are. We are all led to believe at the outset that it is a disease of old age but being on this forum has scuppered this belief. It seems that the cumulative effect over many years of suffering but not being diagnosed yet brings the condition more to the fore (with blood congealing in extremities etc). I now severely restrict red meat consumption and try to tailor my diet to one which is conducive to good control of my PV and this includes exercise. It is all trial and error really I suppose.

  • Hello,

    I have all my life been very active, but around 2003-2004 I started to have severe pain in my right hip. Physiotherapists told me to do some exercises that was very painful and never made me any better, quite the opposite. I stopped going there and became better....

    When I became ill with E.T in 2007, I'd never put the hip problem together with E.T.. I have now, after having read what people are saying here.

    Nowadays, I am trying to go for walks, 30 minutes every day or as often as possible. Got myself appropriate shoes and try to walk with speed. Some days, I just hit the wall. It becomes like climbing Mount Everest just to get home.As I always take my mobilephone with me, I am not too worried but it is not very nice.(I never go on my own for a walk after 18.00)But all exercise has become so difficult. I have a bike at home, but I cannot use it anymore as my back becomes so sore and hurts for days after.

    With age we do become stiffer and less bendable, it will take longer to recover from activities, for the muscles to recover and heal, but that is would happen nearly over the night? No, I was in good shape before I got the E.T., and within 2 months I 'lost' 10 years!

    Also, I have read here that some people are losing weight. I don't! I gain weight,so where do I go wrong?

  • A few years ago I got myself an exercise bike. Shortly afterwards I started to suffer from a hip pain. I went to my GP who pushed and prodded and asked a few questions. I was then sent to have an x-ray to see if I had the beginnings of arthritis but was told everything looked fine. I stopped using the bike and eventually the pain all but stopped. I get twinges every so often, particularly at night in bed.

    The more I read on this site the more I recognise that various mysterious illnesses, aches, pains (latest being a nagging throbbing in my left ear accompanied by tinitus, particularly noticeable when fatigued) are probably ET related. Have given the exercise bike away now. Think going for walks and a fairly non-sedentary job, are going to have to do for the moment.

    Have had ET for over 16 years but have found out more about my illness since discovering both MPD Voice and now the Health Unlocked community over the last 2-3 years than from any of the doctors I have visited in the 13 years prior. Big thanks to all the contributors. The information that everyone shares is invaluable. :)

  • Very interesting to see you replies on this, I asked about excercise at my last appointment at the hospital and was told my PV should make no difference, which made me feel that perhaps the reason I struggled with certain types of excercise was more down to me being unfit than the PV.

    I used to go to a step class once a week but struggled compared to all of the other ladies in the class and often felt silly, my mind wanted to do so much more than my body, I have since given this up and listen to what my body is telling me.

    I now go to a Zumba class which I really enjoy and can do it at different levels of impact depending on how I am feeling, I always come out feeling great. It is nice to have found something that suits as excercice does help with tiredness.

  • Well i exercise 4 to 5 times week at gym for last 33 yrs and since being diagnosed i havent stopped as it helps my mind and i generally feel better . That doesn't stop the worry at times but as my dr said ( keep exercising as it helps) not sure how or even if it will but i think staying strong and focusing on staying well is what will help .

    Hope you keep it up and if you fail at times of stress or fatigue just do it when you can

    Hope this helps😊

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