Extreme fatigue and Depression

[Annushkah]

What do you good people do when you get so tired you are mostly in bed and getting depressed please?

[ksos]

Annushkah, I'm sorry you're feeling so badly. I have times - a day to a number of days in a row - when all I can do is sit on the couch and that is depressing. A few things that help me: I remind myself I don't always feel this way and at some point will feel better, resting as much as I can, and getting outside even if it's just to sit on my porch so I can remember there is a bigger world. Lots of water, as everyone says, and for me, eating more protein helps, although that might be individual. Good luck,

Kim

[Annushkah in reply to ksos]

Thank you but geeze I am still exhausted and have been reminiscing about life before this. Do you ever get angry? I do but angrier than is my true nature before this not necessarily the normal frustrations of our predicament but it’s as if my entire emotional system is jacked up. Nothing is different in the environment today but I “felt” like breaking glass. Constant pressure in my eyes and brain. It’s bio physics and bio chemical. I am five years in and this heightened emotional state is three years old and recently caused me to fire all my doctors in frustration and loss of tolerance. What about you? Have you experienced this destructive phenomenon? I am not in a green state but if I had money I would move to Colorado

[ksos in reply to Annushkah]

I'm only a year in and haven't experienced what you're describing. But given all the other changes I have experienced, I'm not surprised by what you say. But, lord, how awful! I'm not sure where you are, but can you find an MPN specialist and go see them? I'm planning on going to the Mayo Clinic at the end of October. My doctor here (near San Francisco) is very nice but doesn't know anything about this disease. Everyone I've talked to has said to see a specialist.

[katiewalsh]

Hi. I’m sorry you’re having such a hard time. Have you talked to your doctor to see if a different drug might help? Katie

[Annushkah in reply to katiewalsh]

I tried Anegleried (sp?) but it was worse emotionally and all know interferon is very hard. I went off everything last year and felt great until platelets starting accosting organs and joints, etc. There are some clinical trials going on but can’t get in. We are such a small population that no one will invest serious research monies. Thank you for replying. I have pushed everyone away including firing all doctors now I don’t yet have another move but found this site so at least I know you are out there somewhere 🙏

[katiewalsh in reply to Annushkah]

Do you live in England?

[Annushkah in reply to katiewalsh]

Nope!! Bogged down in Kansas City with this and believe have met nearly all the hemotologists or their healthcare systems and none of them have dealt with this specific blood cancer in my demographic I.e. age 63 and 5 years in.

[katiewalsh in reply to Annushkah]

If you can get to Houston to see Dr Syrdan Verstovsek you’ll be in the best & most knowledgeable care I know of. He’s at MDAnderson hospital & can probably provide future care directly or maybe even in coordination with a local (or closer by) doctor. I referred someone else & he learned he’d been incorrectly treated for years. Good luck. Katie

[BeachTeach]

It might be worth a trip to a city for a consult. I’m an hour from Boston and lucky to have the docs I do. Wish I went to them earlier than I did.