Who is able to do exercise with PRV, would love ... - MPN Voice
Who is able to do exercise with PRV, would love some advice.
Hi Joprv, I walk our dog just about every morning for up to an hour, and my work - cabinet maker - keeps me reasonably active, but apart from walking I don't do any specific exeercise. Obviously I don't know your situation but I think that walking is a great form of exercise.
I walk my dog for an hour twice a day every day and cycle pretty much everyday.
I used to jog and go to the gym twice a week but have found that a little expensive of late so am concentrating in road biking instead.
I wish I'd got into road biking years ago as I feel fantastic after a long run, get to see some stunning scenery, breath some beautiful fresh air and keep fit & healthy at the same time.
It's a no brainer for me.
I have PV ( high red cells & platelets plus red cells are damaged & very small, Jak 2 +) & am a life long cyclist, so giving that up was a no starter. However it was hard especially with the fatigue symptoms we all seem to get , the itching don't help either.
A chance to retire early was taken, more time to ride & no work stress = great side effects no fatigue for nearly 4 years & minimal itching.
I ride approx 8 to 12 hrs per week with a group of friends some of which still race & are national & world champions , so the rides are hard & very hilly.
It seems that is the key , the exercise has to be aerobic but as little an- aerobic as poss. If I dont get my weekly dose then I start to get tired.
I realise this may sound extreme to most but it does work & there are slowly more people around the world agreeing with this . The big problem is if you are not used to exercise you
1) MUST seek medical advise before doing anything.Maybe ask to see a sports Doctor.
2)Start slowly & build up , it will take time but boy its worth it.
3)Whatever activity you do , try to do it with others so the days you don't feel like it you will be less likely to duck out & let them down.
4)Keep a diary of how you feel so you can see your progress , check on reation to meds etc, I check weight , blood pressure & pulse approx each month.
5) ALWAYS drink plenty, hydration with MPD'S & exercise is extremely important.
6) Enjoy it be as positive as you can.
7)The worst you can do is Nothing, the Drs are doing there best but we all have to help ourselves a bit .
Good luck , hope this helps you , it has me, I feel great nearly every day.
Great post billy!
Before diagnosis I had problems with itching but fortunately nothing since.
I have noticed a drop in stamina but I just ride within my limits and often surprise myself at what I can do. That said, I'm nowhere near pro standard like you guys.
I only recently bought a road bike and have only ridden alone but I plan to ride with a few guys locally in the near future. Any tips ?
Where are you located and what kind of bike do you ride ?
I remember there was a cyclist who spoke at the last MPN forum in London, that wasn't you was it ?
hii et
Yes that was me in London, Its good to hear you are taking up exercise I have been trying to convince people of the benefits & whist they are very positive it seems they go home & never get around to it.
I live in Derby & ride mainly in the peak district. Currently my best bike is litespeed I have 3 others one of which is a track bike which I use up at Manchester velodrome in the winter. Incidently Derby have just given the thumbs up to build a veldrome in Derby, if you have never tried it, you must its a real buzz, don't know if you are close enough?
As for your new road bike, first invest in cycling shorts & preferably jersey, undervest, also for cold weather top jacket , tights, track mitts, gloves , crash hat. Cycling shoes with your choice of pedals makes a big difference but it all costs money so just get it a bit at a time if thats an issue, Aldi , lidl & Decathlon have good stuff at the right price.The main thing you will probably suffer with is saddle sores, before you put on shorts try applying some Sudocrem cream directly on the skin on contact areas, if you still get sore don't push it to much let it heal you will get used to it. Don't know where you got bike from but did they fit it for you? getting the correct postion is important to get the best out of yourself. As for meeting other riders google cycling clubs in your area & go talk to them explain you ability & find some other riders of similar ability get a routine going & build up slowly & carefully
it will take time, like all things you will have good & bad times , but you will get fitter & feel better (assuming your mpn is under control?). I find as long as mpn under control I have no problem with performance. Don't forget at this stage don't overdue it & rest & eat a little after a ride, if only for an hour, stay hydrated so take a drinking bottle with you if you sweat a lot then try drinking one of the new light sports drinks they replace the minerals you loose thro sweat.Sorry for all that but I could go on for ages but thats about the basics, if your local club is any good they will sort you out.
Please feel free to get back to me you want to know more, maybe you are near enough to get over to the peak district one day?
The main thing is enjoy it, good luck.
Wonderful advice. Just started on high-intensity training on the exercise bike and some road cycling. Have always walked an hour or two daily with the dogs, but the aerobic bit is making the difference. Can now walk up mountains!
Well done dont ever stop now, I say my exercise is part of my medication it makes such a difference.
You are right I found the aerobic part is what does the trick especially for me if its also endurance based.
If you do find it hard to get going have a cup of caffeinated coffee first but only if in morning unless you want to be up alnight.
Hey BillyLipton... 
I am possibly way too late with my response...
But I have been cycling now for just over 2.5 years... and everything you have said is correct... Start out slowly and build up one's strength gradually... Remain as consistent as possible, and I also built myself a new diet around my cycling and aerobic exercise regime...
Winter 2020, I will be hoping to RIDE 20,000kms in Under 200 Days around Australia to raise Funds for Australian Research into MPNs...
Best wishes Billy, stay happy & well...
Steve
(Sydney)
MATES Australian MPN FORUM
Hi!
I m a 58 year old lady and was diagnosed with pv 3 years ago.
My tips.
1) do NOT consider yourself to be an invalid!
2) drink at least 2 litres water (still) a day on top of tea (-my liquid intake is probably around 4 litres a day. This will combat shortness of breath, fatigue, itching, and feeling fuzzy headed- you ll get lots of exercise running to and fro the loo if nothing else..seriously, drink. It will help, but stay away from alcohol if you can (very dehydrating)
3) as much exercise as you can. I walk a minimum of an hour and half a day, up to 5 hours if we re on hol. If you can go at a brisk trot so much the better - gets the old circulation moving.
Hi, I was a very active sports woman from the age of 15. I was still cycling and canoeing every day even at 54 years old, with a very demanding job. Since diagnosis I have been severely fatigued and have been pensioned from work. Over the past few months I have started to cycle on an electric bike so that I can have power assisted peddling, which enables me to wind round my legs or using the power to enable me to ride the bike without peddling when I get to tired. I have friends that take me out in a Canadian open canoe so that they can paddled me around races, I paddle with them when and as much I am able. I try to walk but this is restricted to about 2km before I have to give in. Still it is early days.
The most important thing for me was to be able to engage with people and get outside so I have tried to do the same things but adapt them, which means that I do not feel isolated as I did in the early months of my illness.
I think the way some of the MPDs affect people are sometimes slightly different and where some people can manage more than some normal people, for others the fatigue is more debilitating. The lack of exercise before and for a few months after diagnosis I experienced was purely because I just couldn't manage it. This worried me a great deal as I was always a walker and would not ride when I could walk although I have never been athletic. My consultant told me that things would improve once my treatment kicked in and there was no point in trying to rush things. Being a fiercely independent person I set out on walks only to have to phone my husband to come and collect me as my legs just stopped working. The same happened when I went to meet my sister in town for a coffee. Although it is wonderful to read these posts about how people can ride and walk and seemingly overcome stamina problems, we are all different. I am now much stronger (nine months after diagnosis) and some days I feel I can take on the world. Then I get a period of between four days and a fortnight when things are not so good and I could not think of walking far and even a visit to relatives leaves me exhausted. I have now come to recognise this as just my pattern. i still try always to push the boundaries. The good periods are the times when I try to do as much as I can and enjoy life and the other periods I know I cannot reverse and just learn to accept them, knowing that I will soon feel better. So don't feel inadequate if you are not able to do things that other people can. We are all different and those of us who have never been athletic are not ever going to be. Gentle walks, listening to the birds sing are also uplifting experiences. Just do what you can, keep active within your limitations.
Thank you so much for your wise and comforting words crazy daisy, I have had significant stress with dealing with my illness, 5 years now, approx 5 years also undiagnosed, my PRV has now transitioned to MF, with the fibrosis in my organs, I guess I am strong willed and in a form of denial by wanting to maintain my fitness and vitality, this is a challenge in itself, I take on as much advice as I can to help me deal with this debilitating disease. Blessings to all others dealing with this In their lives each and every day....... Joprv, all the way from Australia .........
So glad you derived comfort from my experience Joprv. Lovely to hear from someone in Oz!
Thank you for sharing. I find it very difficult to exercise and after 5 years i am really working hard at pushing myself to get my level of fitness back....
Hi I am a 54yr old male I was diagnosed polcythemia 17yrs ago I the itch totaly debilitating and everytime I exercised the itch drove me mad, however I continued to train at my local boxing gym 5 times a week. Three years ago I had my spleen removed and had many complications and almost died however my fitness saved my life. I no longer suffer from the itch and train 7 times a week and am very greatfull to be alive and live my life to the full.
john
I am 59 yrs old , have been diagnosed with PRV for over 20 yrs. Im pretty much a very active person . Walking , hiking, skiing , etc. About a yr and a half ago i took up Zumba classes , going about three times a week . Its A very high cardio exercise. My HCT counts became very high needing treatments every mo. I stopped my exercising but my counts are still high. Im not sure if this is coincidence or not. Really want to start working out again but not sure if i should. Anyone else experiencing this situation ?
This is a eureka! moment for me. I have only yesterday discovered MPD Voice, and only now found this forum. I am a club cyclist. Cycling is my passion and my life. In the last 2 years, I have had a few setbacks with my health. My consultants have always tut- tutted when Imtell them how much I cycle. The tell me to rest all the time. I know that the more I cycle, the better I feel both physically and mentally. I have two road bikes, a MTB, and a track bike. I cycle at Manchester Velodrome regularly. I am a committee member of Weaver Vally CC near Northwich, and I am involved in various safe cycling and mass participation campaigns.
This is a eureka! moment for me. I have only yesterday discovered MPD Voice, and only now found this forum. I am a club cyclist. Cycling is my passion and my life. In the last 2 years, I have had a few setbacks with my health. My consultants have always tut- tutted when Imtell them how much I cycle. The tell me to rest all the time. I know that the more I cycle, the better I feel both physically and mentally. I have two road bikes, a MTB, and a track bike. I cycle at Manchester Velodrome regularly. I am a committee member of Weaver Vally CC near Northwich, and I am involved in various safe cycling and mass participation campaigns.
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