Tips/advice

[Paul123456]

Is it useful if we pool our shared experiences on how to minimise symptoms into one tread?

My ‘tips’ would be (and no science here!)

To combat itchy legs post shower/bath, immediately apply Epaderm cream and then trousers/tracksuit bottoms. Lack of air seems to help.

To combat night leg cramps I gently stretch for 10 mins before bed, every conceivable muscle group incl arches in soles. Working theory is that nuts (especially Brazil) exacerbate cramping?

The big one is anti inflammatory diet but this is early stages and very much work in progress. Avoiding refined sugars/carbs and processed food, red meat (iron), most oils other than olive/coconut, lots of fruit, veg, oily fish. Omega 3 > Omega 6. Green/camomile tea. Flax seeds. Will probably end up in a padded cell (especially the 99% dark chocolate mixed with olive oil in my porridge) but the big anti cancer buzz word at the moment seems to curbing inflammation.

Unlikely to be doing me any harm and might pay off, there is an MPN anti inflammatory diet trial ongoing in the States so waiting with interest for conclusion.

[Eoin]

I'm not sure how you go about creating a separate discussion group on here but think it's a good idea to set something up. I posted yesterday re haematologists not really giving encouragement on diet or supplements (apart from eating healthily) to help manage our condition. I feel I've had some sort of success on what I'm doing and I think sharing ideas, diet regimes and importantly if it is having an effect may help others. Maybe Maz could help (if your there Maz what do you think? Keep in touch. Keep well.

[Paul123456 in reply to Eoin]

Eoin

Thanks for reply, I was only thinking that anyone with tips for coping with MPNs could add their suggestions to this thread. Between us all we have a wealth of experience and worth sharing.

[Mazcd Partner MPNVoice in reply to Eoin]

I am here, and as Paul said, he would like people to put their ideas on this thread, which is great.

[flfair]

Hi Paul

My top tip is loads of Magnesium, magnesium is like the petrol you put in your car, without it the body will not run, everybody on this group is running on empty tanks, magnesium is more important than calcium.

Avoid anything containing magnesium oxide.

Peter

[MPort]

Paul thanks for tip on combating itching by using Epadern cream. I will give that a try. I agree about keeping warm i have to wrap legs up to lesson or stop the itch.

Peter Re magnesium. I found epsom salts company do a magnesium water filter jug so the water I now drink is magnesium charged. It tastes good. I don't know overall benefits but I am enjoying it.

Re anti Inflamatory diet. I find it impossible to give up carbs. Any tips appreciated.

Mairead

[Paul123456 in reply to MPort]

I have porridge (incl oat and rye flakes), home made wholemeal bread (since buy store bread fortified), brown rice and spelt pasta. I believe all are reasonably anti inflammatory. It’s the refined flours that are the problem.

As I mentioned above, especially when combined with vegetable oil such as pasties etc. Obviously one can’t be obsessive about all this or one would never eat out! However for me just a general guideline to be followed where I can.

Peter - why avoid Mag Oxide?

Best

Paul

[flfair in reply to Paul123456]

Magnesium oxide is a laxative only about four percent of it is absorbed. I use Doctors Best Magnesium Chelated and magnesium flakes in the bath and mag oil, you need loads of it, med's deplete magnesium.

Peter

[Mazcd Partner MPNVoice]

I have to remind you all that before taking or using any supplements/vitamins etc that you check with your haematologist first, and always check with a pharmacist about any interactions with supplements/vitamins with your medication. Maz