After taking an antiviral therapy for 6 mos I am now ME/CFS

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Hello.  I am new to the forum.  roughly 10 years ago I tested positive for Hep C and my doctor started me on an antiviral therapy that lasted 6 mos and I am free of the Hep C virus but I never recovered from the Interferon treatments.  In the beginning I was only depressed while taking the antiviral but then I started having chills and sweats at night and aches and pains.  Physician said this was normal and would leave after treatment.  Well it didn't.  10 years later I am worse off than ever.  I wake up every morning feeling hungover.  I am so stiff and sore it takes me an hour or more to get out of bed.  I have chills and aches and so tired I can hardly move my arms.  I have had every test imaginable.  I do have low T and slightly anemic and my lipids are high but liver levels are all normal despite having a stage 3-4 for fibrosis and cirrhosis caused by damage from Hep C.  I was in the military and had several blood transfusions in the 60s-I am not a drinker or smoker and used to be a bit of a health nutt.  So my drs attributed some things to my injuries in service.  I was in cognitive therapy for about 4 years until the psychologist himself said my issues are physical and neurological and not mental.  He said neurons were scrambled by the antiviral drugs so dopamine cannot make it to the receptors in my brain and this is why I hurt and who wouldn't I be depressed?  So I suffer and suffer and suffer.  He was the only doctor who admitted the cause was interferon.  Trouble is all of my doctors know I am not a malingerer.  I am a succesfsul  musician and my work is my life, hobby, love.  But at age 68 I am giving up.  Suicide is an option I have been considering for a few months because I just feel like I can't carry this cross anymore.  I am hoping to learn if any of you are finding relief and hope in new therapy.  I find most of my doctors don't seem to care much.  I'm that difficult patient they can't cure.  I play the Native American Flute abd my fingers are so sore to type this they are so painful.   I have to turn down engagements and offers in my musical venues.  Is this what it feels like?  To be wrapped in a cocoon of pain and tingling and woe?  To have no energy?  To see friends and even family members bewildered at my spending more and more time in bed.  I also must say I am limited to what types of pain medications I can take because of my liver and my heart.  two years ago I had a heart attack when a doctor prescribed adderall to boost me up.  I do not blame the doctor. CFS or ME/CFS is a nightmare for me and if anyone has any advice I would appreciate it. Thank you for listening.  I hope this was not too long to read.  I will wait to hear what others are doing and where and how.  Thank you  Oh-I do meditaton and was walking short walks every day for months and months but had to stop about a year ago.  I am excited to learn from others who have been diagnosed and what they do to cope both physically and mentally.

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  • Posted

    Some of us who have ME can't read big blocks of text like that with no spaces. Just letting you know. biggrin
    • Posted

      Thanks Georgia-I will try to shorten the posts and I appreciate your pointing that out to me.  I think I apologized if it was too long to read.  Actually the post was written then it evaporated so I started again and the same thing happened again.  Sorry.  have a nice day.

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