Breathlessness

[lucieboo]

Could it be that the breathlessness (and associated fatigue) many of us are complaining about has its origins in an immune response? It is strange...it comes, it goes....bloods constant, no apparent heart problems, lungs clear...needs studies.

[Inca]

It really does ,I am struggling at this very moment to dress ! Not me to be so weary with the breathlessness,let's hope Maz can find something....like you Lucie boo,I am usually still out with my dogs and fighting the weariness,not just now tho!! Hope you soon feel better and others with this issue ,keep going all...Sally

[lucieboo in reply to Inca]

Oh, I'm so sorry Inca (Sally). Keep optimistic! I was beginning to feel this downturn was permanent, but yesterday I felt better. Did a normal walk with the dogs. My husband said: "You are better! You look better too." Was it the sunshine? Clear, dry air? I simply don't know. It is a mystery that I want investigated. Worst is, if you tell your haematologist, for sure (s)he will just shrug! Or tell you to see cardiologist, GP, you name it! I think we can tolerate ups and downs if we know there will be ups, it is the lack of certainty and reasons/strategies that is challenging.

[Inca in reply to lucieboo]

Thanks for your optimism...I am up and around today after 'resting' the last two,I do have a stent ,7yrs ago almost immediately after P V diagnosis,have often wondered about that connection. I wonder too about stress being related to the breathlessness,since my carcinoma op on face,I seem to have become less positive about everything,lost my lovely dog to cancer recently and two friends.....do feel wrong now,will have my extra blood tests Monday,so just hoping that I can then 'raise myself up'. Start work again!!Would have thought you are in the best air possible.....not so good here Lot et Garonne,can be damp in winter,then very very hot summer.Best Wishes,Sally

[lucieboo in reply to Inca]

So sorry, it is awful when things pile up, and losing a dog is especially hard, they are such good friends to us. Yes, we have a lovely climate and a south-facing 'terrasse' which is super when there is sunshine, lots of woods and shady places around, love it here.Very similar history, stent etc 7yrs ago soon after diagnosis and before the treatment really kicked in. Perhaps there is no alternative to resting up a bit when going through a rough patch: wish you well!

[Inca in reply to lucieboo]

It's good here too generally and we live mostly on our 'verandah'which has has beautiful views,shaded with our own wood.So lucky aren't we to have the days even in winter when the sun is warm and air fresh.My old mares are 32years old,we bred them so I know ,look like 10 yr olds!Doubt they would have lived quite so long in U K! Oh yes missing my big G S D,the black on the pic,,still have the other,but he is lonely,so I am desperate to feel better and get a puppy,hopefully to fill the awful gap....sure the grief is not helping my health....many signs of Spring now,tho blossoms being blown with a strong wind today..maybe we all will be better soon,positive vibes to you too ...Sally

[lucieboo in reply to Inca]

Puppy a good idea. We got ours (Lucie) when I had just been diagnosed, she is a rescue, born in the snow to an abandoned Alsatian. We already had two rescue dogs and I said I couldn't possibly manage another with my health problems, the farmer lady said she would have to kill her if I couldn't take her! (This when we were living in Spain). So I went to look at her and that was it! She really helped me, I walked around with her tucked into the top of my coat. I think having to look after an animal, especially a sweet baby, really reduces your stress level. so good luck and I hope you find a lovely cuddly puppy soon.

[Mazcd Partner MPNVoice in reply to Inca]

Hi Inca, all these symptoms and side effects are being looked into as part of the studies which are ongoing at the moment with the Measures study mpnvoice.org.uk/about-mpns/...

things are definitely moving along in the MPN world. Maz

[Inca in reply to Mazcd]

Thank you Maz,that is good news.I have had lots of blood tests this morning,to see why I am so breathless and weary...hoping to find out a bit more.Best wishes to you.

[lucieboo in reply to Mazcd]

Hello Maz: thank you, this is very reassuring. I know that fatigue is under study, but if breathlessness is also being followed up it could be very helpful. I'll look at he link. This is such a weird disease!

[mol56]

It seems to be one of those things that cannot be explained.

Before I was diagnosed over 12 years ago I went to the G.P. as the fatigue was really getting me down and beginning to affect my life style. I thought I might have M.E (which was in the news a lot then). After a blood test I was diagnosed with E.T. A couple of years later, I left work. I was a teaching assistant and couldn't support the teacher or pupils as well I would have liked. I was 54.

I have been on hydroxycarbamide and aspirin for 12 years. The fatigue I experience does not always correspond with blood test results although I do become a little anaemic on the medication and the dosage is altered for a while.

Tiredness, fatigue and lack of energy seems be the symptom most of us have to cope with whether we have E.T, P.V or M.F Mine comes and goes for no reason but I do feel better after a good walk.

I couldn't work now. I don't know how some of you manage to do that and bring up a family. I feel quite worn out after a visit from my grandchildren.

Hope you feel better soon

Judith

[Charliegirl551]

Hi I was diagnosed in Dec '16 with ET I was just 60 and so prescribed hydroxy and have been ok with it. However, I have noticed recently I do get quite breathless on occasions, and have days of extreme fatigue. Guess it's just side effects of the hydroxy. Also I've gained 14 pounds in weight over the year. I'm trying to eat healthily and exercise - which is not always easy but I do feel better after exercise. Although my legs do ache and are weak too! Anyhow onwards and upwards-just enjoy the good days and press through the not so good! Really appreciate this support group. Thank you. 😘

[Inca]

You both are right,we usually do feel better after exercise,even with the fatigue...I find hiking sticks help,we are in a hilly area,even walking round the garden is a challenge!!! My G P tells me I should abandon the hills and banks while breathless and invest in a walking machine.....thing is I like the fresh air and looking at the countryside...it is a help to know others get the breathing problem,I feel less unusual!!Keep going ,keep strong.

[Inca]

Meant to add my legs also ache and get weak...my work is as a sculptor,so I keep able to manage as it is a relaxing Proffession,and I forget every thing else.....have been known to work too long and be rescued from studio almost collapsed.Thank goodness for my strong husband who carries me to bed!!!!

[Hidden]

I agree, I also have had respiratory tests, heart scans due to breathlessness and persistent cough, nothing shows on tests but I cannot climb a flight of stairs without becoming breathless.

ET since 2088 age 51 on diagnosis.

[Stephen399b]

I was diagnosed with ET last year and on HD plus asprin. I also have systemic mastocytosis which was found from my BNB. Treated with the same plus strong anti histamines. I wondered if my breathlessness was part of this, which is very much linked to the immune system. I get tired but not as bad as many people report, but do get breathless. Does anyone else have mastocytosis as well?

Stephen

[lucieboo in reply to Stephen399b]

Oh my, fits well with my analysis of the breathlessness problem, as mast cells are thought to be at the root of MPN itchiness, which most of us suffer from. The mast cells break down and cause a histamine response. I am beginning to think that many of our troublesome symptoms are linked to the immune system being triggered by the blood abnormalities. It is only a hunch, of course...

[Boss1]

Hi, I was diagnosed with PV in Aug 2013 (Jak2 positive). I have had no real problems with fatigue.

I'm not on HD, just aspirin and ocassional venesection. I know I am very luck right now and the situation will probably change at some point. Is everyone experiencing fatigue on Hydroxycarbomide? Is everyone experiencing breathlessness on Hydroxycarbomide?

[Hidden]

I feel the weather plays such an important part too! I do take a strong liquid Vitamin D but there is no substitute for sunshine! Roll on Spring and Summer

[nivana]

I'm suffering with breathlessness and skin problems at the moment - platelets had gone up at last blood check so I am certain it's due to those pesky platelets. Trying to relax , rest and take of myself to see if I can get them down!! Best wishes to all.