MNP using hydroxyurea and complaining about memory loss and fetigue

[Lovelymom4]

Hi,

My mom was diagnosed with MNP a year ago and since then she is using hydroxyurea. Her platelet count is fine now but she is so concerned about memory loss and fetigue. Is there any supplement that can help her without interfering with hydroxyurea? Like gynsing or ginkgo ?

Please help me I can’t see her feel seem like this.

Please share your experiences with me.

[Simris]

Hi Lovely mom4

Like your mom I too am very concerned about fatigue (not so memory loss), some days I can barely get around and some days can't even get outa bed with extreme tiredness, to be honest getting me down not being able to do "normal" stuff like I used to, I also suffer from being queezy most of the day, was prescribed anti sickness tabs but not any good. I wish your mom all the best 💖💖

love Simris x

[Wyebird in reply to Simris]

Hi both, how are your iron and magnesium levels? It’s worth asking you heamo.

[Simris in reply to Wyebird]

Wyebird with my heamo next week and will mention check iron level. Fatigue very bad so concerned that something else apart from ET happening, just so terribly tired all time and absolutely no energy.

Thanks for your reply

Simris x

[Wyebird in reply to Simris]

Oh Simris I know exactly how you feel. I think this year I can honestly say I’ve had about 2 months of feeling good. I saw my heamo about 3 weeks ago. I explained how I felt. I also get extremely breathless when I try to do chores at a ‘normal pace’. I live in the UK and go to an MPN specialist clinic. The doctor was surprised I felt the way I did because my bloods are good at the moment. I’m so lucky to be at this clinic and I have complete faith in them. I also have a CNS nurse

Do ask about

1- iron levels

2- ferritin levels

3-b12

4- heamoglobin

5-going to fatigue clinic

The only other thing I can say is that no matter how exhausted I feel I must DRAG myself to the gym. For me there is a fine line between ET fatigue and needing to do exercise. I do yoga and absolutely love it. I also swim. It’s as if I need to be kicked into life. I feel normal when I’ve exercised. Others have expressed this also.

Please keep me posted.

Lots of hugs

[souplover in reply to Wyebird]

I agree. Exercise - especially outdoors - does give me more energy too. The fatigue comes back nevertheless. But the exercise seems to help better than anything else.

I'm also trying as much as possible to sleep late.

Has anyone tried CBD for insomnia?

[Wyebird in reply to souplover]

Lol I have a ‘sleep stick’ it’s essential oils originally given to give me a boast.

I find when at night I can’t sleep holding close to my nose makes me take deep breaths to catch the scent. The deep breaths relax me.

[Simris in reply to Wyebird]

Hi Wyebird,

Thank you for your reply yesterday. I will get my heamotologist to check absolutely everything next week when with him, he is a wonderful guy and soooo easy to talk to. I feel sometimes I'm gonna go mad cos I find it very hard to cope with this tiredness and lack of energy, I've always been such an independent person and have great difficulty relying on hubby and others to do stuff for me, I guess I'm lucky that my hubby is retired so always ready to do what needs doing (I just need to get my head round asking for help).

Keep well and chat soon.

Simris x

[Wyebird in reply to Simris]

I was told that people who were very active find the fatigue harder to cope with.

Having a doctor you can relatd to is so important. Glad you have that. I’m also lucky in that field.

Good luck, if all else fails do try yoga. Just take into consideration all yoga classes are different you might need to find a class you like.

Xxxxx

[Lovelymom4 in reply to Wyebird]

Hi

Thanks for your response. I’ll ask them to check these for her. It’s just so sad seeing an independent person being struggling and still trying to be so independent.

[Wyebird in reply to Lovelymom4]

She is so

Lucky to have someone willing to go to such lengths to support her. So thank you

[Lovelymom4 in reply to Simris]

Hi

Thank you for your response.