So... this is new. Question on shortness of breath

[ksos]

Hi all -- I have ET (about 2 years since diagnosis) and up to a month ago, the most challenging symptom I've had to deal with is the dreaded fatigue. But all of a sudden in the last month, I have developed very severe shortness of breath. It is constant and nothing relieves it, no matter how much I rest, exercise, drink water -- do all the things that have helped with fatigue. It's effectively sidelined me -- after fifteen minutes of even the mildest exertion, I can barely breathe and have to stop and rest. I'm working with my doctor to make sure that something else isn't going on, but so far all the tests we've done (heart, lungs) are clear.

In the meantime, I have two questions I'm hoping you all can help me with: 1) while I know that others have mentioned breathlessness as a symptom, has anyone else encountered it so suddenly and with such severe impact? 2) If this is related to ET, can anyone explain the physiology of what might be going on?

Thanks so much! Happy Sunday to you all!

Kim

[Tico]

I don't know if its related to mpn's, i do that a lot of us on here have experiencened it and it was only posted about 2 weeks ago. I have experienced at times but most notably around the time of diagnosis,when i was put on hydrea and symptoms improved,their was an improvement with the breathless. Best wishes,tina.x🤗

[ksos in reply to Tico]

Thanks, Tina.

[katiewalsh]

Hi. I get it but it’s only occasionally so I can’t be much help. Have they checked for blood clots in your lungs? Katie

[ksos in reply to katiewalsh]

Hi Katie - yes, and my lungs are clear. Just got the results from an echocardiogram and that's all normal as well. I'm glad the tests are coming back normal. At least it's all convincing my hematologist that ET does have symptoms after all

[katiewalsh in reply to ksos]

Please check & see if a CT scan is better at finding blood clots. Katie

[ksos in reply to katiewalsh]

will do - thanks!

[Inca]

Yes I have it,also have had asthma all my life which has always been well controlled and never a problem,bred horses and competed so very active,This shortness of breath is different,arrives resting or moving,My

Drs say it is our maladie but stress related,The only thing that helps mine is a mild tranquiliser which relaxes me and aids the breathing.Yoga too,

the breathing exercises are also a help very definitely.Hope you get some relief,it is distressing .Good Luck.

[ksos in reply to Inca]

Thanks. Both helpful ideas. I've started working with some breathing exercises hope that helps.

Kim

[Chaz1]

We have put lots of oxygenating plants around the house, particularly in our bedroom to help hubby who has ET /PV as the effectiveness of pumping blood, & therefore oxygen is reduced in MPN. I read somewhere in the early days (can't remember where) that oxygenating effectively overnight can help during the day. Hubby still gets breathless but it doesn't seem quite as frequent. Not sure how effective it is but his oxygen levels have improved in general

[Wyebird in reply to Chaz1]

Oh I do like that idea. Thank you

[ksos in reply to Chaz1]

I like that idea too. I'm going plant shopping!

Thanks,

Kim

[Stephen399b]

I have ET and get this sometimes - have your red cells/haemoglobin changed? You get more breahless if anaemic.

Stephen

[ksos in reply to Stephen399b]

Thanks, Stephen. I went back to my blood tests and don't see any indicators of anemia, but I'll keep a closer eye on that.

Kim

[Hahag in reply to ksos]

Check ur ferritin it’s ur oxygenated blood not ur hemoglobum

[ksos in reply to Hahag]

Thanks. I'll check that.

[Wyebird]

Breathlessness and fatigue are my major symptoms but maybe not to your level. I find shutting myself away; not talking to anyone and concentrating on my breathing helps. I’ve also noticed the more tired I am the more breathless I am. Maybe get your haemoglobin levels checked.

[Inca in reply to Wyebird]

I am with you on that Wyebird ,but often if I sleep in the afternoon on a bad day ,I wake up breathless.....no answer to that !! But yes chatting too long and lots going on ,I have to remove myself to peace.Feel quite rude ,tho good friends understand and don't mind.

[Wyebird in reply to Inca]

Yes it’s the rude bit I hate. Also when I have a phone calll from my sister and I say can’t talk ‘it’s not good right now’ she replies it won’t take long. I repeat and repeat. 😫.

[ksos in reply to Wyebird]

Thanks -- I just did that -- shutting myself away -- this weekend. We had family over and as things got more raucous, I got more breathless and fatigued -- exhausting just to take it all in. So, I went upstairs away from it all and in time calmed and felt much better. My family is understanding, but it is is a bit more challenging to manage when we go out.

[Wyebird in reply to ksos]

Yes there is no where to do it when our. and also I just hate shutting myself off from my family. Try staying in bed prior to their arrival. Even if you feel like getting up don’t! I’ve noticed that stock piles my energy. I can’t just lie on sofa I just see jobs and do them. If I know I’m out for an eveniNo do I stay in bed for most of day and get totally bored. Then when time comes to get up I’m itching to go out.

Try it 😬

[ksos in reply to Wyebird]

I will! The part of seeing jobs and just having to do them sure is familiar -- although I am getting better at letting things go. No alternative is a great teacher!

[mjn500]

I have asthma as well as ET; I get occasional breathlessness from ET that is definitely different to the asthma breathlessness (though I don't think I could put into words exactly how it is different). However, the asthma inhaler still works! Maybe worth asking to try a blue inhaler to see if it helps?

[ksos in reply to mjn500]

That's great to know! I'm going to check that out. Thanks!

[Flowers1973 in reply to mjn500]

Hi! I have ET and JAK2. I was having trouble breathing. I was just put on an inhaler today. I feel so much better! I hope you feel better!

[ksos in reply to Flowers1973]

Hi! That's great news! Can you tell me what kind of inhaler you're using? I tried something in January but it didn't help. I'm wondering if you have something different. Did your reg. doctor prescribe it? Thank you! Kim

[Flowers1973 in reply to ksos]

Hi! Use Spiriva RESPIMAT. My allergists prescribed it. I feel better. I hope you feel better soon too!😊

[ksos in reply to Flowers1973]

Thanks! I'll check that out.

Kim

[Flowers1973 in reply to ksos]

Take care! Wendy

[JackLina]

Hi ksos. No-one seems to have commented on this but have you thought of checking food intolerances? I have many and can identify most and avoid or reduce their intake. My breathlessness is mainly caused bread (gluten or sulphites), dairy products (cow) and certain nuts. Cashews and almonds are fine but peanuts, Brazils and a few other random types are really bad for my breathing. Definitely, the daily problems arise when I consume bread or other wheat/gluten products and milk. I stopped eating cheeses and butter many years ago.

Just a thought. It may work for you. All the best. x

[ksos in reply to JackLina]

Sorry to be so late getting back to you, but just saw this. Thanks -- and this is a very helpful insight. I'm still having the problem, all testing is normal, so this is another avenue to explore. Appreciate it,

Kim

[Hidden]

It could be stress /anxiety related

I used to get lightheaded from bad breathing and hyperventilate during sleep until l started doing breathing excercises. Now it’s greatly controlled.

[ksos]

Thanks. I've doing some breathing exercises too and am so happy they are helping too. Hope you keep feeling well!

Kim