help me please

[nahida]

my partner has mds aswell as fanconis anaemia, the doctor told him that there was a slight change in his bone marrow he was actually feeling better than ever he hstarted to suffer from back pain in the space of two weeks it spread to all over his spine and back to the point where he was given painkillers used for cancer and morphine i have never heard of this happening his counts are all up does this make sense i am convinced it is not linked to the mds, they are doing nothing for him apart from supposed managing the pain can anyone please offer advice assistance anything please

[Terri]

Nahida, It does seems strange that they are linking this to the MDS. I don’t think I have seen anyone on the forum with the same symptoms. Bob Has terrible Arthritis in his back/spine but we knew that before the MDS so he is always in some pain but not like what you are talking about. Does he have an experienced Hemotologist who is familiar with MDS.

I am sorry I really don’t have an answer but will Include you both in my prayers.

[lindajo]

I have been on pain medication since 1995 for bone pain. It is part of MDS. The past two weeks I have had pain on the left side of the back near the kidney.

After numerous tests we determined that the MDS was just causing so much muscle pain from a lack of oxygen going to the muscles.

I also have scoliosis, a spine curvature. The MDS aggrevates the condition.

The pain medication I take is also given to cancer patients. I take Darvocet. Some days I don’t need any, other days I take up to 4 100mg tablets. It is one of the least addictive pain killers.

I have had tremendous relief from the back pain from a chiropractor and a massage therapist. You might try seeing someone like that. I also have heard good things about pain management centers. Good Luck.

[lindajo]

When I said a lack of oxygen going to the muscles, I should probably clarify. Your blood especially your red cells carry oxygen to the muscles. If they aren’t shaped correctly or there aren’t enough of them, you don’t get optimum oxygenation.

Your body goes into conserve mode and sends it where it is needed most. Most likely the brain and organs. The pain is just a message to slow down and let the bone marrow catch up on production. What has your partner been doing. More than usual because he was feeling better?

Have him slow down and give him a massage. Maybe it could be fun and beneficial for both of you.

[Author]

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