[Tyrell]

Hello,

I have searched and searched for answers or at least something related to my recent problems and i have not had any luck so i really hope that someone out there reads this and can help me understand how to cope.

It has been 8 months since my last transfusion and although it seams i have dodged a bullet here i have a whole new set of problems. Let me give you a quick background. I am a 30 year old Sever AA survivor. I was treated with 2 rounds of ATG with no response and a transplant was not an option because of the condition my liver is in. I suffered liver failure at age 17 and thanks to hyper-barrack treatment was able to recover without a liver transplant but it left me with stage 4 cirrhosis. After not responding to the second treatment of ATG i made the hard choice of termination treatment and living out the remainder of my days with supportive care. Unexpectedly 3 months after stopping immune suppressive therapy my blood level stabilized at just above critical. Meaning I am not in need of regular transfusions however my levels are no where near normal so i live my days in a constant state of anemia.

5 months ago i randomly came down with shingles ( worse pain i have experienced) since then i have never been comfortable with my pain level. I am on a pain regiment of 30mg of time released morphine twice daily and 15mg oxycodone for relief of acute pain. Its not working any more i find myself on double the dose with no relief and my doctor has been reluctant to increase my dosage (understandably as this is already a strong regiment).

So down to the concern and questions. I am in a constant mental battle of "Am i in pain or addicted?" every time i reach for my med bottle i have to ask myself "Do i really need this?" More and more times i convince myself i don't and the result is immobilizing pain. Its mostly in my joints and not centralized anywhere. I feel like its a severe muscle cramp in my spine, then a radiating pain to my extremities followed by a migraine that lasts for days. The pain in my joints is a constant never ending throb. I am so scared and frustrated and confused on how to find relief.

Has anyone out there experienced anything like this. Do any of you that have survived this disease without a BMT and find themselves in partial remission have a continued problem with pain?

Thank you in advance for your input,