I am not new to HW, been here since 2008. Most of the time in the Prostate Cancer group, and in recent months, the Chronic Pain group.
I have been dealing with Chronic Fatigue since year 2000. It started showing up in my life after undergoing major radiation treatments on some previous cancer bouts. I had 3 events of an ultra rare cancer, Porocarcinoma. The last time was the worse, as it was in the lymph nodes of my throat. They surgically removed what they could, and then administered 70 gys of radiation the old school way, spread over 35 sessions. It covered me from below my nose to right about where my nipples are. I had to wear a special face mask the entire time.
I was only 47 at the time, and at first I bounced back fast. My radiation dr. warned me that it might take a few months to catch up to me. And boy, did it. I hit a wall of major fatigue about 3 months post treatments, and it became severe fast. Enough to have me go into Oncology Rehab for 6 months. I went 5 days a week, usually at the end of my work day. The doctor at the time said I would be lucky to get back to 75-80% of my previous energy levels, and he was pretty accurate about that.
Now fast forward to 2009. My original prostate cancer surgery failed within months, the cancer came back, so my last and only curative hope was salvage radiation. I underwent 72 gys of radiation spread over 39 sessions at the end of 2009. To make a long story short, it was administered wrong, and it did a lot of serious damage to me, including the loss of my bladder and bladder neck. It was so bad, I ended up with an Urostomy (stoma).
It was from the radiation damage that I developed severe Chronic Pain, due to all the nerve damage from the radiation.
But it greatly increased my Chronic Fatigue. I have been through another 25 months of Oncology Rehab, and my doctors recently had me stop going, because we never made any forward progress, and all it was doing was making the pain issues worse.
On a good day, I have about 4 - 6 hours of somewhat useful energy time. I was never a nap person in the past, but now require a 2-3 hour nap every afternoon. I rarely feel "rested" even after sleeping, and most nights, I rarely get more than 5 hours of broken sleep, despite being on both Ambien and Tranxene for years for sleep issues.
Up to know, all I have known to do was to tough out the fatigue. Most forms of exercise right now only make matters worse to me, even simple walking due to the Chronic pain issues.
What are some other things I could do to help myself with the CF? I am open to suugestions or ideas. With me, it's like literally hitting an invisible wall every single day. Usually by 3 pm at the latest, I will go from feeling ok to being so drained I can barely stand up or open my eyes. Once I am drained, that's usually it for the day for me.
Sorry this went long, but been wanting to come here for many months and introduce myself to your group. I would have to say, I have gone from 100% energy prior to 2000, down to the 75/80% after the first radiation episode, down to now at the most 20-25% level. Which makes it very hard for me to do much on a given day, which in turns frustrates me greatly.
Any help or suggestions will be greatly appreciate. Before I forget, I no longer work, have been on full SSD since 2011.
David in SC