Tiredness

[D1i2a3]

Hi have had Myelofibrosis for 10 years I don’t know anyone else who has this feel so tired my legs ache feel as if I have the flu all the time 😩thanks Diana

[Osteomyelio]

Seems like many of us do. I’m tired and cramp.

[ccsial]

Hi Diana, I also have MF and get tired easily with cramping and pain. I stay as active as I can. I find exercise helps me. I'm also almost 75 so age is working against me. I often wonder how I would feel if I didn't have MF.

[Mazcd Partner MPNVoice]

Hello Diana, and welcome to our forum. I am sorry to hear you are having these awful symptoms, they can make life so difficult some days. I don't know if you are taking any medication for your MF, but it might be worth speaking to your haematologist about maybe trying something different or even changing the dose to see if that works.

I am sure there will be lots of other people on this forum who will reply to you with some advice and support, they are a great bunch of people and I hope it makes you feel better being in touch with others.

Best wishes, Maz

[harleydavidson]

Hi Diana. I hope you feel better soon. Mel x

[D1i2a3 in reply to harleydavidson]

Thank you

[Jlah]

Sorry to hear this. I hope you get treatment to improve things. Jacquie x

[D1i2a3 in reply to Jlah]

Thank you

[socrates_8]

Hi Diana...

My name is Steve. I also have MF, and often suffer from what I call Restless Leg Syndrome (RLS). However, during winter, I always suffer more than usual from Bone & Joint pain too...

However, and for me at least, as things warm up I generally find that my bone pain does improves a little...

Are you taking Ruxolitinib (Jakafi) by any chance?

Best wishes Diana

Steve

[D1i2a3 in reply to socrates_8]

I take 2000 mg of hydroxycarbamide tried Ruxolitinib wasn’t really sure if it made much difference my platelets are up and down all the time at the beginning 10 years ago my platelets were 1325 now 600 sometimes they get to 450 if I up medication but then end up anaemic Thanks for you help Diana

[socrates_8 in reply to D1i2a3]

Hey again...

No problem... I am wondering if the ache in your legs is coming from the HU or not?

Did you have those same aches when you were on the Ruxolitinib?

My platelets are also always quite high. Apparently, that is due to my driver mutation being CALR Type2...

Nevertheless, I might soon be looking for a combination therapy if my platelets keep ascending, (last FBC 991)...

I do hope you get it sorted soon... On the brighter side of the equation Diana, you are a bit of an inspiration... As you have been MF for over Ten (10) years, and that I find most encouraging...

Thank you for sharing and please do keep us posted, as when you have this all sorted, I will be curious to learn what next steps you took etc...

Best wishes

Steven

[wotan10]

Hi, and welcolm to this forum.

I suffer cramps.

I keep my feet warm.

General aches and pains seem to come and go but are more relevant if I get dehydrated.

As said before have a word with your haematologist they will advise you as necessary

[D1i2a3 in reply to wotan10]

Thanks will see him Wednesday thanks Diana

[Jimmyh29]

Hi Diana

I too have MF and suffer from tiredness and cramp especially in my hands. My haematologist told me just to rest when periods of tiredness come over me

I’m fortunate that I have not been prescribed any medication as my red blood cell count is around the 100 mark.

I’m over 70 with arthritis as well so I’m never sure what is causing my muscular / joint pain. I don’t let it ruin my life

Best.wishes

Jim😊

[D1i2a3 in reply to Jimmyh29]

Hi thank you for your advice Diana

[Fika500]

Hi Diana,

my husband has had post PV Myelofibrosis for four and a half years (he had PV for about 27 yrs) He does suffer from fatigue and night cramps in legs and feet. The fatigue needs to be managed. Our motto is ‘ do what you can when you can and accept the times you can’t’ . Think of your energy like a re-chargeable battery -there’s a finite amount of energy you can use before you need to re-charge. We find it’s best to plan what he wants to use his energy for and work around it, so he rests during the day if we’re going out in the evening. If we go for a walk , he has a good rest afterwards etc. I hope this helps and wish you well. We break activities up o er the day, building in rest/recovery time. I hope thus helps and wish you well.

[D1i2a3 in reply to Fika500]

Thank you for your advice hope you and your husband keep well as well as you can

[clubdino]

Hello. I know the flu feeling you are talking about. I dealt with it for many years until it progressed to the point I decided I couldn't take it anymore. My doctor put me on Cymbalta. I didn't have high hopes for it bc it's just an antidepressant that offers pain relief. But I have to say I saw an 80% decrease in pain. I'm not sure if my leg and foot pain was associated with my MPN or if I have maybe fibromyalgia but I guess all that matters now is I found an answer for it. When I described the pain to my doctor I said exactly what you said above... I said it just feels like I have the flu all the time.

[JenngeetingR828]

Hi - I have read your note in the fatigue and pain in legs and daily flu like symptoms and that was me last year! It was awful and so debilitating. Until I found a new hematologist, I was discouraged and depressed. However, after attending a Leukemia & Lymphoma, event where they had a breakout group on MPNS, I found a group of Dr.’s who believed in also treating the symptoms. I have ET, Jak2 but my numbers were at highest- in the high 659-690. I was 48 when diagnosed and they pretty much felt like I needed nothing but baby aspirin- even though the leg pain and pain in my feet was often unbearable.

Since finding a new dr. I started Hydroxyurea, 1,000 mg per day. And in 6 months.. I have more energy, significantly reduced bone pain in my legs and feet and the daily four like symptoms are nearly gone.

I pray you find a Dr. who will address your symptoms as there seems to me medication that might help. For me, the side effects of the medication were symptoms I already had and they actually got better!

Until you find something - I also found relief in elevating my legs, using a heating pad for my calves and feet when they were elevated- it really really helped!!