Feeling rubbish

[Vanessa0467]

Hi. I was diagnosed with NASH a year ago following ultra sound, fibroscan and liver biopsy and am under the care of Hepatology. I have ITP which the haematologist thinks is down to liver disease. Recently NASH has escalated to cirrhosis and my spleen is enlarged, 20+cms. I feel absolutely exhausted and in pain. Please can I ask if anyone can relate to this? Any advice would be appreciated. Many thanks

[Hidden]

Good afternoon Vanessa0467,

I am sure our lovely forum members will be along to share their personal experiences and to offer support shortly.

I have simply included links to NAFLD/ NASH and cirrhosis for your information.

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

Best wishes,

Trust9

[alfredthegreat]

Hi Vanessa.

I haven't had ITP but I can relate to the exhaustion experienced with cirrhosis.

Before I had my liver transplant 16 months ago I was suffering with exhaustion pretty much all the time.

I know that a healthy diet and exercise has helped some members of the forum combat some of the exhaustion but I'm not sure if that would be the case with ITP.

Hopefully a forum member will be along soon and answer you that has had experience of ITP.

Wishing you all the best.

Alf

[AmericanDemocrat]

Hello, Vanessa -

Sorry you are having such a rough go of it. I had acute (short-term) ITP for about a year, and I can definitely relate to the extraordinary fatigue you are feeling. I remember once heading to the airport for a work trip, then suddenly realizing that I was too tired to possibly get to Seattle. Just the plane ride seemed insurmountable. I told the taxi to turn around and take me home.

The one thing I wish I had known (which I hope might help you), is that ITP can really pack a punch, and one should not self-judge. I gave a lot of mental real-estate to criticizing myself for being “lazy” and “unproductive.” I hope you will instead go easy on yourself. Understand that the exhaustion is massive, very real, and not your fault. Also, during times that the fatigue briefly lifts and you want to be more active, just take care not to fall or otherwise bruise or hurt yourself, lest you have a bleeding issue.

I am guessing you are on a high dose of prednisone, which comes with its own set of difficulties. That’s a lot to deal with, in addition to all your liver medications.

Don’t give up hope, though. My ITP was supposed to be life-long, but it resolved unexpectedly.

I cannot imagine the double impact of cirrhosis and ITP, and I really feel for you. Perhaps practicing radical acceptance, while still fighting the good fight, is one way to think about it.

Sending good wishes your way. 🌸

[Hidden]

Hi

I'm sorry you are in pain . I have Nash caused by meds from my drs over the years. My liver is very enlarged which stretches the capsule around it, this has all the nerves in it which is where your pain will be coming from as liver has no nerves. The pain I get us horrendous but I have pain all over cos if my conditions. Hope you get some relief from your pain. Love and hugs Lynne xxxx