Myelofibrosis and bone pain

[kiwitraveller]

how do people manage bone pain with Myelofibrosis. I used to get a dull ache in my shin bone only at night occasionally but now it is just about daily and is impacting on my ability to sleep.

I bought CBD oil but it is not really helping and paracetamol doesn’t work at all. I don’t want to get into taking codeine all the time as it’s not good for you. Welcome comments on What has worked for others.

I am fit in all other aspects and my platelets are down to 550 the lowest for a long time. However am anaemic with a rbc of 2.40

[Orangeboykitty]

I tried CBD oil and it didn't work at all. However, when mixed with THC it worked wonders, especially at night. You would have to determine for yourself the exact percentage of each oil.

[kiwitraveller in reply to Orangeboykitty]

thanks for that unfortunately in NZ cannot get THC oil but will be in US next week so will try there.

[Orangeboykitty in reply to kiwitraveller]

Maybe you can get a ready-made mixture. Might be easier to get than pure THC. Of course, if you can get pure THC you might be able to mix it yourself.

[IsabelleHo]

Hi kiwi… I have ET and have experienced bone pain for the last two years, especially in winter. And since I live in Canada, you can imagine the nightmare LOL

I do a mix of things to manage the pain. I found a heating pad helps a lot as well as what we call a « magic bag » (« sac magique ») in Quebec. It’s a thermotherapeutic bag filled with oats that you either heat in the microwave or cool in the freezer.

Since my bone pain is mainly in my back and in my legs, I’ve added a mix of exercices to my crossfit routine in order to strengthen my muscles. I bike during the summer and walk a lot all year round since I don’t own a car. My diet is mainly Indian food, which is filled with antioxydants. Does it help? I think so, the pain is more manageable than two years ago. Or maybe I just got used to it

Depending on the level of pain, I use Tiger balm. My GP prescribed me Tramadol when the pain is unbearable which I take very very (did I say « very »? LOL) sparingly. She also prescribed me a very low dose of bioquietapine to be used as sleeping pills since it’s not addictive. I tried CBD and THC which are legal here in Quebec and it didn’t work for me, I found it made the pain worse.

Keep trying stuff, I’m sure you’ll find something that works for you.

[kiwitraveller in reply to IsabelleHo]

thanks so much for that am sure I will get it sorted

[AnBee]

have you tried using Curcumin? Can be very effective for the bone and joint pain. For myself I take Curcumin and 1 gram of NAC After adding the NAC I have had a marked improvement of all symptoms especially bone pain and fatigue.

Will look forward to see if my platelets and LDH have improved on next blood test in a few months.

[kiwitraveller in reply to AnBee]

thanks will check that out

[katiewalsh in reply to kiwitraveller]

You need to check with your doctor about using curcumin because it affects how our blood clots.

[AnBee]

also have a look at your VitD levels. Low levels can give bone pain and fatigue. Adequate levels are around 100-160nnmols

[kiwitraveller in reply to AnBee]

ok that is one I didn’t realise so will check but somehow think living in NZ lack of sunlight is not an issue!!

[AnBee]

NZ like southern Australia has significant sun angle during winter that greatly reduces available vit d generating sun, much like England. Summer may not be so bad though !😊

[kiwitraveller in reply to AnBee]

didn’t know that one although I spend most of my kiwi winters in Europe so get sun all year round although the NZ summer that year was dreadful - rained all the time - will still get Vit D checked

[katiewalsh]

I don’t know what NAC is or it’s effects but curcumin affects clotting so should ask your doc if these are safe for you. Curcumin is an anti-inflammatory and it may be safer to eat low inflammatory foods. Good luck. Katie

[kiwitraveller in reply to katiewalsh]

yes I would be cautious - do follow an anti inflammatory diet and just focus on foods that reduce inflammation

[Wyebird]

hello, lovely to be in touch again but wish it wasn’t under your circumstances. I do hope you find an answer soon

[kiwitraveller in reply to Wyebird]

thank you still travelling and making the most of life - not going to let this stop me