I'm recently diagnosed with ET (CALr, ~850 Platelet count) but from other blood tests in my medical record they suspect I've had from my early 30s.
I'm not sure whether its ET or age (now 42) but I seem to constantly be straining muscles and they are taking ages to heal / recover. Whereas for a muscle strain (e.g. from gym / sports etc) it would take about 3 days to heal up it is now taking about 2-3 weeks.
I think its been about 9 months since I didn't have one part of my body that was strained / sore. I just wondered if this is just getting older or whether its a symptom of ET and if it is ET whether anyone has any strategies to deal / alleviate this.
Thanks
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Jpn4
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Our bodies can become more injury-prone, do not tolerate injuries nor heal as well as we age. Aging is not for sissies. It is usually a subtle change over time but it does most certainly affect us all.
The deregulation of the JAK-STAT pathway does more than make the body make too many platelets. It also causes the overproduction of inflammatory cytokines. This proinflammatory environment causes many of the secondary symptoms we experience. This may also play a role in what you are experiencing. Inflammation is not our friend!
It is important to keep at the exercise as we age. Maintaining good overall health is a critical part of managing a MPN. Sometimes we have to make accommodations as we age but the older we are the more important exercise becomes.
I am not aware of any studies that indicate that hydroxy or one of the other cytoreductive agents reduce inflammation in MPNs. At a certain level, it would make sense that some of these agents might help with the level of inflammatory cytokines. These agents, ruxolitinib in particular, are known to help with MPN secondary symptoms. Perhaps someone else has seen some research on this topic.
I injured my shoulder on sport. It was not healing after months hence I requested bloods & tests which threw up eventually after a lot of demands from me for more tests, that I had ET Jak 2.
I definitely think this has effected my healing process which is still not back to normal .
I’m very interested to read your post! I have had a recurring ‘niggle’ for many, many years (from exercise related strains in shoulder and chest at some point) which now manifests as upper back (under shoulder blade) shoulder and pectoral aches following exercise sometimes (on one side only) which now seems to be a weak spot.
It used to be sorted with massage, acupressure techniques etc and taking it easy with the exercise until resolved. More recently it seems to flare up frequently and with less exertion and is made worse by any repetitive movements. It did improve with Bowen treatment, which deals with the fascia, but even that seems to be taking so much longer to sort itout.
I was diagnosed with ET in 2019 and am on hydroxy and low dose aspirin. I am now wondering if it’s a symptom / side effect of ET?? Maybe its inflammation which is now causing this?
I'm 48 and experience the same. Long recovery times. Days of delayed pain comes from the lightest of exercise.
I work three days a week in a physically active job. And I try to exercise. But I'm in constant pain, strain and aches.
A fews years back I got fed up and dropped the exercise altogether. But that was worse in my case. The work day knocked me out without the fitness from exercise.
It's like some sort of exertion intolerance. I just have to endure it because I know it's best for me to exercise in the long run.
I'm always using massagers (I have a whole array). Foam rollers. Heat creams. And I stretch alot. Makes my muscles feel better.
I used to be very active. Running, lifting weights, long walks, interval training. But the last few years it's really hard. I'm down to short walks and very light weights. (Like 5kg). Even with that my muscles freak and act like they have never lifted anything. And are sore for day. Then that overlaps with the soreness from my work days.
It's very hard. A constant cycles aches at minimum and pain at the maximum.
Doctor did test for inflammation and didn't find anything significant so I suspect something else unknown is going on and is part of the disease for some of us.
Here are my strategies
-keep calm as much as possible. Make it your mission. Don't let anyone take you peace away.
- don't over do coffee. Use it strategically.
- alchohol is a no go zone now for me.
(Anything that stresses or burdens the body such as stress, caffiene and alcohol will make the aches worse is my experience).
-daily stretch, massage, and eat well, (the more fruit and veg I could eat in a day the better I felt. I still eat meat. But little. Suger makes things so much worse.
-Sleep is a must, guard it like your life depended on it.
-as far as exercise I train myself as if i was training an 70yo. I'm not it a hurry to progress anymore. It was a bit of a punch in the ego. But I've accepted it now and just try to work with it.
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