Fibrosis Pain

[susanML]

Hi - I am going for an BMT evaluation in the next week - but am curious does anyone have MDS w/RAEB excessive blasts and now developed 3+ Fibrosis on top of it? How about the pain - my pain level get so so high sometimes and have you found anything that helps? Has anyone got a BMT for the two situations (MDS and the Fibrosis) thank you for any replies Susan

[billyb]

Susan, what do u take now ? Is it all over bone and joint pain?

[Susan L]

Hi - I am not on anything but pain meds since I work fulltime - It affects me working if I take anythingelse - but it is getting really hard. I hurt all over -mostly my large bone in for arms shoulders legs and hands. My stomach and back has started just this week really bad - I am ready to see the doctors on Tuesday. Best wishes to you

[billyb]

Susan, Leukemia & lymphomia Society has a good publication ( NO. 19 ) on Pain Management, you can go to there website and in the search bar, punch in Pain Management Facts...As you well know pain management can be a tricky area with some doctors. With Leukemia, pain can start of as an aggravating pain, but after treatments, radiation other factors and time the same aggravating pain can turn into a hurtful pain, your Medical Team should be able to come up with a medication or a combination of medicines to control your pain and safely allow you to function with day to day activities. You had been thru a lot and have been on a few different treatments, over the long term these treatments can effect the bone and muscle structure of the human body. My wife has tried all sorts of meds, but had a hard time because most pain meds made her sleepy, she was finally put on Methadone for long acting ( it has a very long half life ), and it relieved the pain and didnt make her sleepy ( it works differently than other pain meds ) also it was better on her liver....but thats her

[Susan L]

Thank you for the info--I am diffenately going to talk to them about it.. Bless you and your wife - wishing you some happiness