Still here!

[Not2bad]

Hi - just realised it's been a long time since my last post.

I've been trying to get to reason for my fatigue - as I mentioned in previous posts it seems to catch up on me, as if I just run out of energy all of a sudden. I get to the point where I've had to just lie down on the kitchen floor cos I don't have the energy to stand up! The consultant didn't think that the MF would have progressed so much to be causing that level of fatigue so suggested coming off the Pegasys to see if that could be causing a reaction (unlikely). My platelets had dropped into 'normal' range (under 450) so she was happy for me to come off the pegasys to test if the fatigue improved. That was in December so I haven't had any meds since then (just Aspirin & my BP meds).

My platelets have come up a bit (690 on Monday) and the consultant is happy for me to stay off the Pegasys for another while.

Unfortunately the faitgue is still an issue, I have good days and bad. I got an e-bike recently and that has been fantastic - I get out 4-5 times a week with my wife, kids and friends. On good days I don't use the engine much, on bad days it's turned up full for the whole ride.

The consultant had referred me for some tests to rule out any medical issues for the fatigue. I've had an echocardiogram (clear) and an ECG which showed a Right Branch Bundle Block, I'm waiting on a Lung Function Test but there seems to be something else going on that has the Respiratory Doctors busy! It'll be a while before I get that done.

Anyway - sorry for another long post - I don't mean to sound negative. I'm generally good - the fatigue seems to build over time and then floors me. When I was working in the office it happened more often, now I've been working from home since March it's only really happened a couple of times - just yesterday in fact.

I know a few others have replied to my previous posts with their own experience of fatigue - it is real and it's something that we need to be aware of.

thanks for reading

F.

[ConniesDad]

Hi F. I will sympathise with you here.

I am the same; some days just a couple of hours pottering around the house and garden and I am wiped out to the point that I have to sleep for a couple of hours. Other days I can keep busy all day without any fatigue, although this is often followed by a day of being virtually unable to get out of bed.

The cardiac issue does sound worrying but at least the medics are ‘on it’.

I guess we MF’ers just need to learn to listen to our bodies and make sure we get good rest when we need it.

Good luck with the respiratory/cardiac issue

All the best

Garry

[hunter5582]

Glad you posted again. Sounds like you will need to rule out other causes first, but it may well be that this is just a fluctuation in the symptoms of the MPN. You did not mention it, but I am hoping that iron deficiency and anemia were also ruled out. The right branch bundle block could be the culprit if it is severe enough to be interfering with blood flow - can cause shortness of breath and exercise intolerance. Not sure if that is what your are experiencing. Sometimes it is a combination of things. It really is hard to sort out sometimes.

Regardless - I hope you get it all sorted out soon. Please stay in touch and let us know how things go.

[Not2bad in reply to hunter5582]

Thanks for the replies guys, I have noticed a shortness of breath and my heart rate doesn't seem to go as high as it used to when exercising although that could be watch not picking up the hr properly. I used to race bikes and would regularly get heart rates over 190 when working hard. Now it seems to top out at below 150.

I suppose I'll know better when I get the proper tests done.

In the meantime it's a case of keeping going and trying to recognise the signs and taking the rest before it goes too far!

Thanks again

Finbar

[Chaz1]

It's good to get it checked out

Hubby had the same referral becauae of his fatigue - it was actually the fatigue & brain fog that sent him to docs & led to his diagnosis. We are fortunate that there has been no thrombotic events & apart from fatigue, brain fog, memory loss, shortness of breath, gout, itching etc.. he's generally ok. But there is no other cause for it with him & nearly 3 years after diagnosis we are having to live with it & find ways round it, such as you are with your ebike. Which sounds a lot of fun & a bit of freedom. I'm not sure why some seem to have it more but with similar blood levels as others. Whether it's the mutation burden or something I don't know. But it is so definitely real. The little snores in our daily life is like our backing soundtrack 😉

[Not2bad in reply to Chaz1]

Hi Chaz1 - it's funny when you say to most people about "fatigue, brain fog, memory loss, shortness of breath, gout, itching etc" they would think 'that's awful' whereas you (your husband) and most of the people on here regard it as "our backing soundtrack". A good attitude is a wonderful think - well done you!

[Chaz1 in reply to Not2bad]

Thanks, it's weird as some people don't think it sounds too bad. And most days it's not as we have to get on with it. I'm just home from work & hubby is snoring beside me after we've had the same conversation 3 times today.... least he won't remember I've brought new clothes online 😉😂

[Hopetohelp]

Thank you for posting and letting us know how you are doing. Look forward to your next post. Fatigue my biggest problem too

[Wyebird]

It’s taken 4 years for me to be able to cope with my fatigue. YRS I’ve laid down on floor and even had paramedics out- can’t speak or breath well.

I suggest you go to fatigue clinic and see an occupational therapist. She helped me enormously.. if I know I’m going out with friends for an evening I stay in bed all day. Even though I want to get up I grit my teeth and lay in bed. I can dance the night away then.

Also I use Saturday as a rest day.

Being a woman I Can’t believe I’m saying this but you need a manCave. When you are in it no- one must disturb you.

I’m a lot older than you 60+ but fatigue is fatigue.

[EleanorPV]

I have PV. I get floored with fatigue after every infection. I've found Pegasys very helpful. Also understand fatigue. We are all different. I take longer to build up my stamina. If I push myself then it takes me twice/three times longer to have energy. Some days getting out off bed is too much. As others have said it important to rule out other issues. Good luck. It can be a lonely place to be. Xx