Aa
9 years of fatigue and joint pain
I came to this forum in search of hope ---- I am only 56 years old but feel 80
I spent 20 years in military flying for the USAF ----- no drugs - drank, but my liver was in perfect condition
Got Hep C 85/90 from a Gamma Globulin shot (whole blood plasma) and went 12 years without it being detected and quit drinking day I was diagnosed
I can remember the day I took my first shot of Interferon and took the Ribo
I can also remember having more energy than I could burn off (If I didn't wear myself out I had trouble going to sleep and could put in 36 hour days flying with 8 hours sleep for weeks) I remember waking up and looking forward to getting my day started as soon as possible no matter what I had planed
I took my shot and slept for 3 days for the next 4 days I could barely do anything but go on and take it 1 day at a time. 6 months Interferon / Ribo ---- 10 months Peg-Intron / Ribo Nothing worked still had 1A Hep C.
It has been 9 years since I stopped the treatment and I am still feeling like I am on the treatment --- debilitating fatigue / headaches (move about) / joint pain / back pain (from injuries prior to TX but from lack of activity have gotten worse and require pain medication now) / brain fog lack of concentration
The VA and the rest of the doctors won't accept that this all came from me taking the Combo therapy when I know exactly that is when it all started (liver is still same as it was back then)
My question is one that I do not advocate anyone else to try, but I have become so desperate that I have resorted to trying things to help overcome the fatigue. I have known folks that have been recreational drug users forever and one of them came to see me since I barely have enough energy to go to the store let alone drive 6 hours to visit them.
They left me with some crystal meth and I held on to it for 3 months before deciding to try it. I did a very little bit about 10 AM because of all the things I want in life is to be able to wake up and have enough energy to look forward to doing something / anything. I did it that early and only a small amount because I wanted to be able to go to bed that night.
The strange thing was that I didn't feel high / euphoric ----- I felt "normal" for the first time in 9 years. I had breakfast and cleaned my house and ENJOYED it. I did go to sleep that night around 2330 but didn't sleep well. Which made the next day seem like it was a normal day of being back to exhausted.
This started me trying to find answers as to what happened to my body from the treatment and if there was a way to reverse it since the drug is a chemical reaction on the body and brain and not totally due to still having Hep C and getting older
I did find some things on the forum about about Post Interferon Syndrome and things others had done to combat it. I know that the drug I used can not be a solution nor do I want it to be.
Anyone know what it did to make me feel normal and how to repair that type of damage so I can wake up and not feel like I haven't slept for 3 days ? I do know what that feels like because I had done it before with drugs so I have a frame of reference as to how run down I am.
I am going to try some of the things others have tried and talk to VA about re-balancing amino acids and other things
Any insight would be greatly appreciated
I spent 20 years in military flying for the USAF ----- no drugs - drank, but my liver was in perfect condition
Got Hep C 85/90 from a Gamma Globulin shot (whole blood plasma) and went 12 years without it being detected and quit drinking day I was diagnosed
I can remember the day I took my first shot of Interferon and took the Ribo
I can also remember having more energy than I could burn off (If I didn't wear myself out I had trouble going to sleep and could put in 36 hour days flying with 8 hours sleep for weeks) I remember waking up and looking forward to getting my day started as soon as possible no matter what I had planed
I took my shot and slept for 3 days for the next 4 days I could barely do anything but go on and take it 1 day at a time. 6 months Interferon / Ribo ---- 10 months Peg-Intron / Ribo Nothing worked still had 1A Hep C.
It has been 9 years since I stopped the treatment and I am still feeling like I am on the treatment --- debilitating fatigue / headaches (move about) / joint pain / back pain (from injuries prior to TX but from lack of activity have gotten worse and require pain medication now) / brain fog lack of concentration
The VA and the rest of the doctors won't accept that this all came from me taking the Combo therapy when I know exactly that is when it all started (liver is still same as it was back then)
My question is one that I do not advocate anyone else to try, but I have become so desperate that I have resorted to trying things to help overcome the fatigue. I have known folks that have been recreational drug users forever and one of them came to see me since I barely have enough energy to go to the store let alone drive 6 hours to visit them.
They left me with some crystal meth and I held on to it for 3 months before deciding to try it. I did a very little bit about 10 AM because of all the things I want in life is to be able to wake up and have enough energy to look forward to doing something / anything. I did it that early and only a small amount because I wanted to be able to go to bed that night.
The strange thing was that I didn't feel high / euphoric ----- I felt "normal" for the first time in 9 years. I had breakfast and cleaned my house and ENJOYED it. I did go to sleep that night around 2330 but didn't sleep well. Which made the next day seem like it was a normal day of being back to exhausted.
This started me trying to find answers as to what happened to my body from the treatment and if there was a way to reverse it since the drug is a chemical reaction on the body and brain and not totally due to still having Hep C and getting older
I did find some things on the forum about about Post Interferon Syndrome and things others had done to combat it. I know that the drug I used can not be a solution nor do I want it to be.
Anyone know what it did to make me feel normal and how to repair that type of damage so I can wake up and not feel like I haven't slept for 3 days ? I do know what that feels like because I had done it before with drugs so I have a frame of reference as to how run down I am.
I am going to try some of the things others have tried and talk to VA about re-balancing amino acids and other things
Any insight would be greatly appreciated
Best Answer
yes I think they've helped! I felt better the 2nd day! I'll only take them for 2 months see how I go-am only taking 100mg in the morning but I certainly feel more positive.This may also be because it's Spring and the sun has been out!
I'm not on any other anti deps-I hate them too,nasty things
I was prescribed citalopram post tx but didn't get on with them.
I just toughed out treatment too but looking back I would say by week 11 I was depressed-how could you not be? I was expecting the physical sides,I'd seen folk go through chemo but NOBODY told me my brain would be turned to mush and I'd lose my essence.
I'm not on any other anti deps-I hate them too,nasty things
I was prescribed citalopram post tx but didn't get on with them.
I just toughed out treatment too but looking back I would say by week 11 I was depressed-how could you not be? I was expecting the physical sides,I'd seen folk go through chemo but NOBODY told me my brain would be turned to mush and I'd lose my essence.
Have you tried the 5 HTP ?
It sounds like it was studied for being on the IFN to minimize associated depression
Whats funny is I had no depression while on TX. Which is why I am probably why I am in the condition I am in. I had a positive outlook and toughed it out when I should have called it quit, and the long term of the TX is what thru my system out of whack
I think that is why the anti-depressants made me want to kill myself
It sounds like it was studied for being on the IFN to minimize associated depression
Whats funny is I had no depression while on TX. Which is why I am probably why I am in the condition I am in. I had a positive outlook and toughed it out when I should have called it quit, and the long term of the TX is what thru my system out of whack
I think that is why the anti-depressants made me want to kill myself
I hope the new treatment makes you SVR AND clears up some of your problems
Cooking ----- no desire to put whats required to make a wonderful meal --- eating have to do it and make it as healthy as possible
The cytokine storm is stuff released into brain ---- My CFS specialist recommended I get Omega 3 from Chia ----- If it doesn't help I am gonna make a pet with the leftovers
Cooking ----- no desire to put whats required to make a wonderful meal --- eating have to do it and make it as healthy as possible
The cytokine storm is stuff released into brain ---- My CFS specialist recommended I get Omega 3 from Chia ----- If it doesn't help I am gonna make a pet with the leftovers
i am so tired..4 years now…
cytokine storm is interesting..came across that term last year.
really depressed today. there are so many things i want to do. and yes typing hurts ... pain in arms and legs..tired..need to cook and eat vicious circle..
how are you guys doing?
i see some docs next week… may start sovaldi olysio.. ?
cytokine storm is interesting..came across that term last year.
really depressed today. there are so many things i want to do. and yes typing hurts ... pain in arms and legs..tired..need to cook and eat vicious circle..
how are you guys doing?
i see some docs next week… may start sovaldi olysio.. ?
The depression always seems to be for folks taking the TX not for us folks left in the aftermath of destruction
I haven't ---- I over did it yesterday (did some yard work) and am going back to bed after being up 45 minutes so far
Everyone take care of themselves
I haven't ---- I over did it yesterday (did some yard work) and am going back to bed after being up 45 minutes so far
Everyone take care of themselves
... a bit sick right now... over did it with the 70F wind storm cycling day then we had 50F rain & wind storms which brought me migraine headaches! and now we are back in the 30F!
I was probably born to be a cyclist or that is what I have been told. Even during treatment I would do about 10 - 20 miles / day. I did 72 weeks of treatment. I did a ton of hiking and walking during the winter as well. I feel the hills of PA are even worse that the hills of San Francisco!
I have such a passion for cycling. SF brought even for of it to me. I discovered single gear cycling there. Free wheel and fixed gear. I bet otter that you would be able to pick up my silver fixed gear! It is really light. But then it only has a front break - don't really need it if you're strong enough to control the rear wheels with your leg muscles! No relaxing on a fixie! But what a speed demon.
Looks like the electric toothbrush I have, a Braun - isn't a sonic - don't think that is the issue... seems my teeth are rotting from the inside out. We do have fluoride in our water, toothpaste. When I tell the dentist I have an electric toothbrush. They still say I am brushing too hard. I tell them the thing stops when I brush too hard. They can't say anything then. I have no bleeding etc. I floss all the time but not aggressively, Whatever... Will ask if a sonic will do any difference.
That 5HTP sounds interesting otter. I don't know what makes me able put so much positive power forward but it is what I do. It takes sooooo much energy to put on a happy face every day. I don't let on my true self! It would be disastrous! I do take an anti-anxiety pill morn and nite which I know helps a lot.
Did you start that other thread Rick?
OK, going to try to sleep off this headache.
Best to all,f
I was probably born to be a cyclist or that is what I have been told. Even during treatment I would do about 10 - 20 miles / day. I did 72 weeks of treatment. I did a ton of hiking and walking during the winter as well. I feel the hills of PA are even worse that the hills of San Francisco!
I have such a passion for cycling. SF brought even for of it to me. I discovered single gear cycling there. Free wheel and fixed gear. I bet otter that you would be able to pick up my silver fixed gear! It is really light. But then it only has a front break - don't really need it if you're strong enough to control the rear wheels with your leg muscles! No relaxing on a fixie! But what a speed demon.
Looks like the electric toothbrush I have, a Braun - isn't a sonic - don't think that is the issue... seems my teeth are rotting from the inside out. We do have fluoride in our water, toothpaste. When I tell the dentist I have an electric toothbrush. They still say I am brushing too hard. I tell them the thing stops when I brush too hard. They can't say anything then. I have no bleeding etc. I floss all the time but not aggressively, Whatever... Will ask if a sonic will do any difference.
That 5HTP sounds interesting otter. I don't know what makes me able put so much positive power forward but it is what I do. It takes sooooo much energy to put on a happy face every day. I don't let on my true self! It would be disastrous! I do take an anti-anxiety pill morn and nite which I know helps a lot.
Did you start that other thread Rick?
OK, going to try to sleep off this headache.
Best to all,f
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I knew as soon as I didn't improve post treatment that the drugs had damaged me.It took 5 years to finally get a diagnosis of Post Interferon syndrome.I know exactly how you feel.However you do still have hep c and as the liver is the body's engine this may well be contributory to you feeling fatigued.Energy borrowed has to be paid back so you probably found that you had a few days completely whacked out post your experiments,it may well have been delayed so you didn't associate the two.If you have liver damage and hcv you really shouldn't make it work any harder than it already is so I'd leave out the chemicals-tempting as it may be to have a 'normal' day! I found cutting gluten/chemicals has helped and pacing myself very strictly can leave some spare energy now and then-it's life Jim but not as we knew it!