EXERCISE & DIET ADVICE FROM DOCTOR

[samiris]

Hello all! This Q is about exercise/diet. Have you had any serious talk and advice with doctor/nurse about routine exercise and lifestyle matters in struggling with PV and MPN diseases? Have you been referred to massage therapy or other similar services to enhance blood circulation and well being? How about referral to a dietitian?

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Don’t expect any sensible advice from any of them. A couple of years ago, I went with my diabetic mum to her GP, diabetic nurse & an NHS dietician. All a load of rubbish, you’ll learn far more from reading a good book. The diabetic nurse even told her that “ it didn’t matter what she ate or how much she weighed “. I was speechless and flabbergasted at this ignorant woman.

The dietician wasn’t much better as they have to stick to the govt guidelines which are just plain wrong and make people sicker.

I seriously doubt massage therapy will help you either and you’d probably have to pay for it yourself .

Sorry, not very positive.

If you can be more specific about what you are hoping to achieve, what you are currently able to do, people here may be able to give you some ideas of what has worked for them.

Have you been checked for vitamin, minerals deficiencies? Maybe a good starting point.

[IrishHiker]

Hi,

I have and was told to do what I felt comfortable doing in terms of exercise. With diet, because of my diagnosis, I need to not eat lots of foods with Vit. K in them because I need to watch iron levels. I never asked about massage but I have had massage and when I go I explain my diagnosis. The massage therapist knows about blood clots in the legs and how not to massage if there is a chance of massage releasing any clots. The ones I went to also asked what medications I was on and so was careful not to apply too much pressure and cause bruising since I am on blood thinning med.

I recommend talking with your doc, getting a nutritional consult and for sure getting a massage😊

[Loubprv Volunteer]

Hi I agree with Debra.

They’re all clueless.

Diet wise I personally steer clear of all foods and drinks that contain caffeine ( inc decaffinated) preservatives and additives, which pretty much rules out all the rubbishy preprepared and processed foods and drinks.

Pretty much if it comes in a plastic packet ( barring fruit and veg) don’t eat it, make you own. There are lots of really good vegetation recipe books and online recipes.

I drink Rooibos tea which is naturally caffeine free, and fruit tea etc.

I promise I’m not a sandal wearer who bays to the moon!

I just feel better. Do I miss decent coffee - you bet - but caffeine is a poison so why drink it.

I eat organic chicken and non organic lamb ( lamb is grass fed and not stuffed full of rubbish) limited organic dairy produce, but I eat only around 2/3 ozs of meat a day - if that, quite often I don’t eat meat for weeks. We need only about 2 oz a day of first class protein, but loads of fruits veg and salads - limiting the amounts of very sweet fruit such as grapes and bananas and eat lots of green veg. Sweet potatoes onions and garlic are good too.

As Debra says, buy your self some decent books.

I don’t drink alcohol but that’s me, most people with MPN’s do so to no detrimental effect whatsoever.

Exercise wise I would say brisk walking is better than anything, gets the circulation going and stimulates endorphins. Plodding along at zero miles an hour won’t do much for you.

If you’re overweight try and lose some.

Massages are ok if you enjoy that sort of thing, but I reckon a good hour to two hour walk will do you more good and save you money.

Louise

x

[hunter5582]

There is absolutely no question that diet and exercise help to manage the symptoms you experience with PV. However, most hematologist know little about this sort of holistic healthcare. To be clear though. do not expect to see huge changes in blood cell numbers due to diet and exercise. What it helps with is the secondary symptoms we all experience, particularly inflammation related problems. It also helps to reduce cardiovascular risk factors that are much more significant in the presence of PV. You will also just feel better when you are in overall better health.

Massage therapy can help with pain control if you are experiencing back pain of other muscular/body pain. It is also really relaxing and a great way to de-stress. I go at least once per month, more often when I need it.

Quick version of what helps:

1. Mediterranean / anti-inflammatory diet. Heavily plant-based. Avoid processed foods. Stick to whole grains. Avoid contaminated foods found in commercial food chain - hormones, pesticides, antibiotics, xenoestrogens, etc.

2. Cardiovascular conditioning. Healthy heart = healthy life.

3. Mindfulness practices, e.g. yoga, Tai Chi etc.

4. Anti-inflammatory supplements: Curcumin (available form), N-acetylcysteine or L-Glutathione. Note: Most hematologists are not familiar with complementary health approaches. I see an Integrative medicine specialist as these supplements can interact with other meds.

Hope that helps.

[socrates_8]

Hey Samiris...

Great Post & great questions too...

Personally, I have found my own specially contrived fitness routine now for sometime, and thus far I would say that all of my results are positive ones...

MPNs, have the potential to limit our longevity through the progression of those 'Proliferative' blood cloning issues, which in turn can cause many adverse effects, and let's please NOT forget either that most of the med's we all take to manage our MPNs, are also toxic, and highly so in many cases...

Hence, anything that we as MPN patients can do to alleviate our own suffering and increase our longevity, well frankly... it's a no-brainer really, isn't ?

I've long been abiding by an Anti-Inflammatory dietary regime, which also includes daily 'Intermittent Fasting', along w/ regular and consistent levels of exercise, (in my case cycling).

When I first started cycling, i could barely manage 3-5km per session, (was n ever really into cycling much as a child), now it's 100s km every week... Almost 6,000km so far this year...

Obviously, everyone might be just a tad different and everyone should consult w/ their medical team before venturing out too far... Best to be sure we are first up to the task, right?

However, it really doesn't matter how much or how little one does, just that they become and remain consistent... DIET plays a huge role, in my view...

I will promise you this... It will NOT happen over night, but if you stick to it... You will definitely succeed, such as I continue to do too...

My name is Steve. I am Post ET / MF -CALR+ Type2 - ASXL1+ (HRM) w/ (acquired (?) Type 1 or 2 Von Willebrands Disease VWD). I have previously had two (2) TIAs (minor brain strokes due to my stubbornly high Platelets (currently 800-900s). Diagnosed 2016, but I am still here and feeling healthier than I have for many years... other than my MPN issues of course...

Best wishes, stay safe & well...

Steve

[samiris in reply to socrates_8]

Dear Steve, your posts are informative and helpful. Thanks!

As I observe from a family member with MPN, some people with a sort of disease feel/think they must shut down all normal activities for health, like regular exercise & healthy balanced diet, till they are free from that goddamn disease. It is wrong. Exercise and healthy diet are universal and essential elements of good lifestyle, no matter having MPN or whatever. Thank you for giving hope to people in this forum, who many of them are suffering in pain desperately need hope and advice. Your advice and experience are very useful and effective for them.

Wish you a long happy life in good health! 👍🌼🚲

[socrates_8 in reply to samiris]

Hi Samiris...

Thank you for such a lovely message...

It is often also true, that many people upon diagnosis, become somewhat overwhelmed by the news of having an MPN. Each of us must learn how to come to terms w/ that change to our existence. It took me sometime to adjust also...

We are all today living in such extraordinary times... In some ways, people all over the world today are also having to come to terms w/ a similar diagnosis, (CV-19), one where our world(s) have dramatically altered and forever changed, and we all must learn how to adjust and adapt to a new reality, and being forced to do so (in some cases), just creates greater opposition, in my view...

Time and patience w/ myself, was something I had to learn too...

Stay safe & well...

Steve