Polycythaemia Vera

[Goliat]

Hi! I was diagnosed with polycythaemia vera about 11 yrs ago and spent years not having enough energy to lead an active life. Four years ago I was diagnosed with coeliac disease. While PV increases my levels of hemoglobin, CD decreases it. That balanced my levels and I was leading a close to normal life but had to go on a strict gluten free-diet. My CD is now under control but I went back to high hemoglobin levels and lack of energy. I would like suggestions on how to manage my lack of energy. Any suggestion will be appreciated. Thanks.

[ja66ck]

Hello! I was diagnosed with PV earlier this year. I usually do a 3 mile brisk walk, several times during the week, to keep my energy level up. There are those days when exercise is not the answer and I just rest. My biggest concern with my condition is whether or not I'll be able to handle working a full-time job. I've been so hesitant to get back to work, but I'm getting to the point where I don't have a choice. I hope that you find the solution that works best for you. Good luck!

[Smile2 in reply to ja66ck]

Hi. I was diagnosed with PV a few months ago. I understand your concerns about fatigue. I find at the end of my work day (I work full time as a clinical social worker) I usually have a long nap - an hour or two). That seems to enable me to keep on working. However, it certainly cuts down on my after work life. I try to remain as physically active as I am able but understanding and acknowledging my body’s need for rest is probably the best thing I do that enables me to keep on working in a job that I love.

Of course everyone is different. For some, keeping a really physically active life works. That’s not something I can do and keep working. Only so much energy so I think you have to make your choices on where to put that energy based on what means the most to you.

Hope that helps.

[Goliat in reply to Smile2]

Thank you, Smile2. I guess because of my CD my lack of energy is doubled. I really used to have a lot of difficulty even getting out of bed (for 4 years). It's not that bad now but when I have an active day, I then have to rest for 3 or 4 days. Hopefully, this group will help me find ways of dealing with it.

[Smile2 in reply to Goliat]

Hi again. I have polycystic colitis so some of the same symptoms - on a no gluten, dairy, caffeine or alcohol diet. Also have lupus - collecting autoimmune diseases seems to have been a hobby for me for the last few years. And yes, the CD would absolutely add to the fatigue issues.

I think because of physical issues I just haven’t been hugely active - just normal stuff like having five grandchildren and a social life with my husband and friends.

I work hard on the expectations I have for myself and on trying to acknowledge how unrealistic they are. Trying to love myself better - for what I can do. It helps but it isn’t easy. It was really difficult to acknowledge I needed to nap after work when there was an ongoing list of things I felt I should be doing running through my head. But I also knew if I didn’t I’d pretty much be a mess for the rest of the evening and feel it into the next day. And then it would become an ongoing cycle of fatigue.

So I don’t have a anything miraculous to offer Goliat. Wish I did. But I am here if you want to chat.

Take care.

[Goliat in reply to Smile2]

I really don't want to go into more details like COPD, mother of three, Social Worker, Teacher and University Professor, eternal student and so on. Just had a TIA in February so I really could go on but it's not my intention or desire. Anyway, thanks for your help.

[Mazcd Partner MPNVoice]

Hi Goliat, sorry to hear that you are suffering with lack of energy, and as ja66ck has said, exercise can help sometimes, we have some hints and tips on our website that might help

mpnvoice.org.uk/living-with...

mpnvoice.org.uk/living-with...

best wishes, Maz

[MCW22]

I keep a bottle of metatone tonic in and have some when I'm feeling particularly lethargic. It's one of the few things that doesn't contain iron so is safe with PV.

[Goliat]

Thank you Mazcd and MCW 22 for your suggestions. I will follow both as I really want to be able to keep on with my life.

[MCW22]

Have you had your thyroid checked? Coeliac disease often goes hand in hand with an underactive thyroid. Coeliacs are also at higher risk of diabetes and osteoporosis. I keep a pack of energy sweets in my bag so if I'm out anywhere and feel a wave of weakness washing over me, sucking one of those gives an instant lift.

[Wyebird]

Finding a routine to suit you is going to take time. It’s going to be frustrating. time consuming and maybe depressing wholistic also fighting fatigue. Good luck xxxxx

[Goliat in reply to Wyebird]

Thanks.