Bone pain urgh

Hi DizzyDee80 and I'm sorry to read how much pain you're in.

I'm not a member of this forum but noticed that your post hadn't had any replies. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

I hope you can get some relief soon 

((hugs))

Hi DizzyDee,

I was diagnosed with CML in Jan 2024 and lately I've been experiencing bone pain as well; this is a new symptom to me, and I'm not loving it. At first I thought it was possibly arthritis but then that CML lightbulb went off and I realised it's the bone marrow cancer I have! Duh! I notice the pain mostly at night and it's in my long and larger bones-arms, legs and pelvis and not much has relieved it, so I'll be watching your post for other's feedback. I've tried tylenol...no luck, hot bathes...no change, magnesium...didn't notice a thing, I have taken to smoking marijuana as it does relieve pain but it also zonks me out and I don't know that it's sustainable long term as it stops being effective; I have a ridulously high pain threshold and a very quick metabolism so most pain meds don't work or I need more meds than the average person. I am going back to my GP next week to ask what might help and if she shares anything interesting, I'll reach back out but feel free to reach out to me anytime. Hope you find some relief and take good care.

:) Brooke 

Hi Btooke, 

I'm sorry to hear yore having it rough. I saw my consultant yesterday and when I mentioned an increase in bone pain again he said oh your leukemia good so it can't be that. This is the same consultant that a week after diagnosis when my brain was working again told me that the TKIs and leukaemia cause bone pain, which I reminded him of but he still denies it's anything to do with cml. I swear I sat there with my gob open like i was catching flfliesso I told him that lots of people with cml whom I speak to have bone pain and have been in mmr5 for years but again he just dismissed it. My pain is there daily in the background and I just live with it but some days I cnt even think it hurts so much. My GP is useless although I do seem to be able to get an appointment these days lol.

Anyway I hope your GP is better than mine and is helpful even if its in some small way. 

Merry Christmas xxx