I am not my body!

[Jilltap]

I am not my body. That's all. I woke up in terrible pain and started chanting this to myself. It worked better than the pain Meds And I fell back asleep. Took Meds later but the chant really helped. Hope it can help someone else. Hugs to all my new friends.

[Newdawn Administrator]

I'm so glad you managed to find a way to almost psychologically step outside of your pain jilitap but I'm concerned about the amount of pain you're in. Is it the result of your Ibrutinib treatment or do you have additional and pre-existing conditions which cause you pain?

Presumably you've discussed this pain with your Consultant? Can anything be offered to you as this must be hard going. Glad the chanting helps but it might prove somewhat difficult unless you live alone.

Best wishes,

Newdawn

[Jilltap in reply to Newdawn]

I wish I knew for sure what was causing the pain. I had two frozen shoulders and that was painful but with pt I was able to get through most of the immobility and pain. It seemed to come back with the ibutrinib treatment and is now in the muscles, bones and joints. Being a type 1 diabetic for 44 years I am susceptible to these kind of issues. I also have had several trigger fingers (fingers locking and painful) which again is common in diabetics. It is frustrating not knowing what is causing the pain and what doctor to talk to. Oncologist, endocrinologist, orthopedist. Monday I am seeing my accupuncturist and oncologist so hopefully one of them can help me. I have a feeling the ibutrinib triggered a lot of these issues I was already susceptible to. My wbc, after 7 months dropped after rising from the ibutrinib. It is still over 100,000 so I would like to see if it drops again before switching Meds.

[Newdawn Administrator in reply to Jilltap]

Can only wish you luck in finding the answers jilitap. When we have pre-existing conditions it's an even greater balancing act with meds and intervention.

Take care and best wishes,

Newdawn

[Jilltap in reply to Newdawn]

Thank you

[DocM]

I get the fingers locking down as well. Osteoarthritis can be heightened with CLL and during the winter months I have a lot of problems with this. Some days, manually unlocking them with the other hand can be painful. On those days I use a naturopathic remedy made from agave...it's called tequila. Have a good one Jill

[Jilltap]

😄 thanks. Love those natural remedies!