FATIGUE - PV

Hi everyone.... another issue I’d like to talk about is PV fatigue..... there are days, like today, where just walking from one side of the room to the other or getting up from sitting takes everything I have in me and it makes me angry cause I feel like I’m giving it all to accomplish ... the fatigue feels like it’s coming from way way deep inside and nothing will pull you out!!! Does anyone have this experience?

[Hidden]

Dear Keiks

I hear you and I feel you. There are more and more days I don't get out of bed through sheer exhaustion. I had an iron infusion recently but it did improve iron levels but didn't make me feel much more energetic.

Anna ET HU

[Hidden in reply to Hidden]

Hi Anna .. it’s awful ... I know. It’s the worst fatigue I have ever experienced! And sadly, people in my life just don’t hear me... I don’t expect them to understand, just believe it. Very frustrating!!

[Hidden in reply to Hidden]

Dear Keiks

Your short response brings tears to my eyes. It is SAD so sad that we are sometimes made to feel like hypochondriacs.

Another day.

Anna X

[Hidden in reply to Hidden]

Yes, true!

[Chaz1]

Hi, my husband has ET/PV and although he doesn't talk too much about it in detail it's evident how much fatigue plays a role in his life. I can look at him & know when we are out that he's had enough, can see at home when he's struggling. Some days he struggles to get out of bed, some days he struggles to keep his eyes open at all. Before his diagnosis I use to wake him up as he was missing out on conversations, films etc... How bad did I feel once he waa diagnosed, now I let him sleep, I know he needs to sleep, it's what his body says. I also get him home or away from the event when he looks so tired. He struggles being in company for too long so once he's in the car he can sleep on the way home. My family can see it too which helps. It's difficult to manage & the haemo is quite dismissive of it as a symptom. But he paces him self, stays hydrated, naps when he needs too & we try to plan activities round managing it. Venesections make him feel a bit better for a week as well but not always.

[Hidden in reply to Chaz1]

Hi Chaz1 ... I feel for your husband !! And before I was diagnosed with PV 2 years ago I use to complain about how my fatigue felt like it was in my blood (odd that I was able to describe it that way before I was diagnosed) .... felt like he just didn’t really hear me, then when I was diagnosed he felt bad too but Chaz1 I really don’t feel my family and friends believe it... they think the fatigue is easily resolved by taking a little rest time!! It’s not their fault at all it’s just that if they would just give me a little time to really explain it and they really listened then maybe they can get it. “WE DON’T LOOK SICK” so how tired can we be all the time?!! That’s part of our hell so we just do what we can for ourselves. It’s nice to hear that your family sees his struggle... that is a huge deal!!!

Sounds like your an incredible person in understanding what he is going through!! My husband is there maybe 80%. ... but that’s pretty good, they couldn’t possibly fully understand our disease!!

STAY WELL CHAZ1. !!!

[Chaz1 in reply to Hidden]

Sorry your family don't understand. Have you tried showing them the spoon theory, it's quite a good way of explaining it. Hubby's family are completely lacking in understanding, it's led to him not spending much time with them, when he's puahed himself to get out & about and they say, oh you look alright but you know how much he's pushed to get there makes it less enjoyable. My family have been amazing, they will leave a room for him to go & rest in or if at ours know when it's time to leave as he's exhausted. That takes so much pressure off him. We've found so many people assume you are ok if you look it, although don't you think that if people really know you they'd see it. Hubby looks almost grey when he's struggling & I can see it in the droop of his face & his eyes. It is evident but people don't always want to see it. We had the issue with his work not recognising it. I try to be supportive, it's not always easy, and I'm not always patient but we have to make it work. Glad your hubby is there 80%,that's much more than some. Stay safe x

[Hidden in reply to Chaz1]

Hi Chaz1

You are the first person to mention the droop in the face and eyes. I get it and have it really bad now but I have never been able to relate it to my ET. Your hubby may find his condition is compensible and be able to get a pension. Thank you and all the best.

Anna

[Inca]

Yep,12 yrs of P V,I force myself thru it...sometimes cannot manage.

Horse,dogs,keep me necessarily going,but without hubby to help I would be a goner.!!!!I am sculptor ,so always have a reason to work....again cannot manage many hours of concentration.Keep going...you will get thru.Just not as before.

[Hidden in reply to Inca]

Hi Inca ... yes, so thankful for work although some days are harder then others and as you say, hard to manage many hours of concentration for sure!

I think it’s amazing that you have your sculpting... that has to be a form of mindful meditation for you as well as your precious animals!! Thankyou for your support and I wish you as well as possible!!!

[Aime]

Hi Keiks, every sympathy. It is a horrid symptom which sometimes I can fight by extra fluid, exercise, food like pasta, bananas and other times I have to give in to it and listen to what my body is saying.

Legs and arms are like lead, brain foggy, etc. Not easy to deal with and so easy to be hard on yourself, very anxious and very annoyed with yourself. Sympathy from others (apart from this forum) is zero as people don’t understand - it’s not just being tired! Often it’s not even an exhaustion that sleep can cure!

The old saying: don’t worry about things you can’t change - otherwise you waste precious energy. I prioritise my tasks and only do the essential on such a day, otherwise if I push too far, I will be useless for days!

Be kind to yourself, kind regards Aime x😻😻

You are not alone as you can tell. We understand how you’re feeling.

[Hidden in reply to Aime]

Thankyou for your support Aime and you couldn’t have described/articulated the struggle better!!! And I like the pasta part !!!! But yes I am just beginning to give myself permission to just give in and allow myself to do nothing and be ok with that !!!!! I mentioned the mantra in another post .... “I’m not ok and that’s ok”!!! Need to remember that !!!! Thanks again Aime !! Please stay as well as possible !!!!!

[Hidden in reply to Hidden]

Hi Keiks

Firstly, I hope today is better than yesterday. I say that because the pain, exhaustion. migraines or headaches always seem worse today than they did yesterday. Did I read correctly that you like to sculpture? If you do, I would love to see some photos.

Ehugs Anna XXX

[Hidden in reply to Hidden]

Hi Anna ... I did have a better day.. seems that when I do a “little more” in a day, I’ll suffer for it the next day or two. I’m not the sculptor, “Inca” is the sculptor and I wouldn’t mind seeing some pics too!! 😃

[Hidden in reply to Hidden]

Thank you Keiks.

Anna X

[jillydabrat]

Hi my lovely, fatigue is one of the biggest problem that I have with PV. My husband took over the weekly shopping because I couldn’t walk around the store without getting so tired that I had to cut the shopping short and go home. I also have terrible bone pain which I have a hard time understanding. I read somewhere that someone had explained it as your bone marrow having a covering and because your bone marrow is working overtime it irritates this covering and radiates through the bone. Whether this is true I don’t know, what I do know is that my bone pain is so bad, especially if I stand in one place to long, that I now have an electric wheelchair to help me go around shops and a mobility scooter for going to the park or just getting fresh air. I hate that my illness has affected me like this and that I have to have copious amounts of pain killers but I am grateful that I still have a life and forever grateful to my precious husband for helping me through this

[john0084]

Dare I say it but another illness entirely is depression., which has those symptoms you describe. I've found that having a rare blood disease makes so many problems that depression is hard to avoid.

[Hidden in reply to john0084]

John0084 I agree !!! There have been many many times I’ve said to my husband that I really feel that I’m depressed! I feel like I’m constantly dragging myself.... I work 4 days a week and I’m so glad for the work because it gives me a feeling of being a productive person and it distracts what I go through with my PV ! Are you trying to find ways to distract yourself?? Just taking a long walk also sometimes works for me too.

[Hidden]

Hi Jillydabrat !!!! I’m so so sorry for you.... I get extremely tired to the point where I will go shopping and then I feel like how am I going to get back and then put all those groceries away... for me it’s sometimes an all day event !! My husband tries to do the shopping as much as he can which helps for sure......But That’s how I felt yesterday!! I get the bone pain too but not as bad as you -yet- but it is awful .. I tend to feel it more at night and sometimes the pain comes on intense and suddenly!!!!! I think that a big part of our disease is the anger we have for the change in our quality of life!! I’m working from home during Covid and last week I decided to re-paint an easy living room wall (I know, I don’t what the hell I was thinking) anyway it took me 2 days and the next day I was a mess !!! I had no energy at all, I was itching/pinching/burning, I was extremely irritable and I was on the couch all day watching tv !!! I used to get through a whole room in 2 days just a few years ago (I love painting). So that really brings you down. But we can only do what we can !!!! We have to practice the idea that “I’m not ok, and that’s ok”!!!!!

Stay well Jillydabrat!!!!!!!

[clubdino in reply to Hidden]

Hello. I suffer from horrible fatigue. I can sleep 20 hours a day on my days off with no problem. Something that has helped me is the ADD medication Adderall. It gives me energy to make it through the day. I doubt your hematologist would prescribe it but your GP may if you describe your situation.

[Hidden in reply to clubdino]

Oh really.... I could just bring it up with my GP... he’s a tough one though... he’s only been in practice for 4 years and doesn’t sway from “books” easily. Good to hear what works for others... gives us hope!!! Have a safe day clubdino!!!!

[souplover]

Hi,

The main symptom for me is also fatigue. As someone said here, it's a very deep fatigue. It feels like climbing up out of a deep well or trudging up a hill with sandbags around my waist.

It has helped me immensely to hear that others on this list are feeling the same, that I'm not crazy or being a hypochondriac.

What I've found that has helped:

1. exercise - especially outdoors

2. sleep - (exercise helps with this too)

3. pushing myself to get started even when it's hard

4. change in diet to eat lots of green vegetables for the iron

#3 - It is often SUPER tough to get started. Others who don't have PV or ET just don't understand how much effort it takes. It feels impossible. And yet, if I can coach myself into standing up and doing a few quick light stretches or simply going outside, just walking for a minute, then maybe I start to gradually feel better.

I know most people would give into it. But I'm stubborn and I'm still hungry for life!! But I know and I feel that I won't always be able to push myself like this.

[Hidden in reply to souplover]

Yes !!! I feel exactly the same way !!! Constantly pushing myself and I will continue to do so ... so glad for my job because that pushes me and gives me a feeling of accomplishment!! I describe the fatigue as “coming from deep within my blood”. . It does feel good and hopeful to hear from other MPN sufferers! No one gets us like we all do here in this forum. I’m so glad I finally joined in!! I also am still hungry for life so you keep that hunger going!!

Be safe !!!!

[souplover]

I think my family feels like I'm crazy to push myself when I feel that deep fatigue.

I think it's worst in the morning when I wake up and at night, when I simply cannot do one more thing. But I've learned that if I can push myself in the morning, I actually feel better. My doctor told me, "the more you do, the better you'll feel. the less you do, the worse you'll feel." and that has proven to be true.

Despite battling this exhaustion, I'm just about to start a new job, working on environmental issues. I'm a longtime activist working on the climate crisis, so for me this feels like a chance to work on what I see as the defining issue of our time.

I really do understand that deep hunger for life. I could have said no, it's too much for me and chosen to retreat. But we only live once and I want to make the most of my one and only precious life!

So Keiks, I say, go for it!! Just know that it will take extra work and sometimes will feel like an uphill battle. But if you enjoy your work and your life, it will also add energy to your life.

[Hidden]

Hi souplover... I feel worst in the morning and by about 5 or so I’m done ! Especially on a work day. Some days worse then others. I give myself permission to be ok on the days when I just can’t push myself at all and I’ll just do nothing!! But work really is a blessing in many ways for sure! And I think your going to be really glad you took that environmental position... you’ll feel really good about yourself, there will be “tired” days but you can still get things done...after all, we’re still here and functional for the most part !! Good for you ... it’s great work and something you love to do !!!

I wish you all the best in your new position and be safe .. I’ll be looking for your post once your settled in that job!!!

[JaK2ET]

Having only just read this thread I would like to offer my congratulations to all of you who, despite problems with crushing fatigue, continue your work or other productive and useful activities. You are all heroes!

[Hidden in reply to JaK2ET]

Yes Jak2ET , I agree !!!! Heroes for sure!!! Pushing through unfortunately makes others think “we’re fine” but we have to push that aside and just keep going!!! Best to you !!!!!