I am ET JAK2+ aged 62 on 9x500mg Hydroxy. When I was diagnosed with ET, I started to look after my health like never before. I have been walking every day before work for 30-40 minutes. I have a friend who is 69 she does a lot of running. I quizzed her about this. Her advice was if you can run like 20 meters only, then you do that and keep going for a year. This encouraged me greatly. I started running in September, at first my knees were very sore and I had stabbing pains in the heart but I persevered. Now in December my knees do not bother me and no more pains in the heart. But I still cannot run more than 200m at best, more like 50-100m without having to walk in between. I mentioned this to Prof Harrison at my appointment in December, she thinks something is not quite right, I should go and see my GP. I also had another blood test for iron which will take a couple of days to come through. I thought my inability to progress with the running was down to Hydroxy lowering my blood counts and thus the energy levels. Anyone else out there had similar experience or have any advice to give me?
ET, running, fatigue: I am ET JAK2+ aged 62 on 9x... - MPN Voice
ET, running, fatigue
Hi Searcher56,
Don’t be too disheartened, you might be expecting too much too soon.
Firstly, I think it’s important to make sure that there are no other underlying health problems, so do take that advice to see your GP. If you are cleared to continue running, start with power walking breaking into small stints of running that you are comfortable with. This way you’ll build up stamina. I tried running many years ago, and that’s how I managed it at the time. Unfortunately for me, running didn’t agree with my knees.
Walking every day before work for 30/40 minutes is an achievement in itself!
Mary x
Hi - agree that you want to talk about this to your GP. Do you need to stop running and walk because you have trouble breathing? I've found that to be true when I exercise since I was diagnosed. I don't run, but I walk regularly and sometimes it's difficult because of breathlessness and I have to walk much more slowly. From what I've read, labored breathing a common mpn side effect -- but it is best to talk to your doctors.
Hope this works out for you,
Kim
I don't get breathless, just tired all over. When I walk up a flight of stairs, my legs feel like lead, other than that, the running makes me feel well for hours afterwards.
I would get it checked out. Recently, I began to experience breathlessness and tired legs when walking what had been normal walks with the dog. (I maintain a somewhat active lifestyle, getting my 10000 steps daily and 150 active minutes weekly). I attributed it to HU, but my Hematologist didn't feel my blood counts indicated I should be experiencing that level of fatigue. My GP suggested a cardiac work-up, and sure enough, I had a blockage and needed a stint. It is pretty frightening, but I'm glad my Hem suggested following up.
I went to see my GP back in August because the haematology nurse at Guys suggested it, I cannot remember the reason. The GP run some blood tests for hemantics, that is the levels of minerals and vitamins in the blood, 75mg glucose tolerance test and an ECG. All came back normal. So I will be going to see the GP again in the New Year once she has received the letter from Prof Harrison. I love the running, I feel well for hours afterwards and generally well all the time, but my legs feel tired when I climb a flight of stairs, almost like lactic acid building up. Also I am going to try the Elimination Diet and maybe the Ketogenic Diet as well. I have been a sugar addict all my life and maybe changing from carbohydrate to fat burning could be the answer, if not, at least I would have learnt something.
Hello again, what is this cardiac work-up?
The cardiologist of course took a full history, an ekg, which appeared normal, and then a nuclear stress test which indicated the possibility of a blockage. There was supposed to be an echo cardiogram before the stress test, but the schedule was disrupted, so they omitted it. Because the stress test indicated a possible blockage, they later performed an angiogram to confirm, and that is when they placed the stent.
Hello Andy,
Just a couple of questions. You had an ECG which appeared to be normal but you still had this blockage. I have had a couple "normal" ECGs, one last September. What is this nuclear stress test and the angiogram? Am I becoming a hyperchondriac? I have had irregular heart beats ever since I was a teenager, I used to worry about it but no longer do because I can live my life in spite of them. Did the stent help you?
I don't think you are becoming a hypochondriac. These are questions you should discuss with your GP. In my case, my hem and my GP were concerned because I was reporting becoming breathless while doing what had been normal activities (for me), for example, walking the dog. Because I have ET AND a family history of heart disease, they both felt my general heart health should be evaluated. Each of us, of course, have a different a different health profile. So, the nuclear stress test is one where you don't exercise to stress the heart. Instead, they use a radioactive dye and an imaging machine to measure the blood flow to your heart. In my case, as part of the test, they stimulated the heart with nitroglycerine to measure flow under "stress". I'm not sure why they did that versus having me walk/run on the treadmill. The angiogram, which is also called a cardiac catheterization, was scheduled later as a follow up, since there was evidence (but not proof) of a blockage. They ran a catheter from my wrist to my heart and were able to see all the arteries, valves, etc. and were able to measure the blockage. They were able to place the stent as part of the same procedure. I believe that the stent has improved things, but that could just be psychological. The cardiologist says maybe that's what made the worst of my symptoms go away, or maybe not, but as long as I am doing well, he is satisfied. He's not definitive, because other than a family history, I don't have any of the usual risk factors for heart disease.
I think it is great you can walk for 40 minutes. Nice job. Skip the running idea and just walk longer if you feel a need to do more. It is hard on your joints at our age. And yes, get your PCP involved. I used to run before et, now I have trouble walking throughout the grocery store. Keep up the great routine.
I want to run, I only run on grass at a local park to keep the damage to joints at minimum. Also I bought myself expensive goretex running boots because I am prone to spraining my ankles and also to keep my feet dry in the grass. The cardiovascular effort gives me a feeling of great well being afterwards. My sister-in-law had bad knees many years ago and she was due for an operation. Before that she went on holiday in Guernsey Island and it is beautiful there, so she decided she was going to walk every day even if it killed her and after a week her knees got better and she did not need the operation. So when I started running, my knees were sore for a long time but eventually they stopped being sore. Vitamin D3 often helps with joints.
I’ve had issues with exercising, running is really difficult for me, in that I run out of energy. Whereas I can swim 20 lengths without too much trouble. Walking is a great idea and I could make the time to do it. It’s just really hard to come to terms with not being able to enjoy a good high intensity workout, like I used to.
Even though I was diagnosed 10 years ago with ET/which looks to be progressing to MF, I’ve never really been able to accept that I am no longer able to exercise as I used to. I have just recently, 6 weeks ago, started interferon, so I’m keeping my fingers crossed for some positive changes in my blood factory, and once everything is stable, hopefully I will be able to do higher intensity workouts including running 🏃♀️
I hope everything works out for the best for all.
Paul
I've been diagnosed with PV for only a few months, but I've been able to continue to enjoy mountain biking. I used to run quite a bit, but it was hard on my knees and I was usually sore after a run. Since I've started mountain biking, I can get in a good workout without any soreness afterwards. It's also a lot more fun than running or walking :-). Just something to consider. Wishing you all the best!
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