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Not Just Fatigue: A Story About Advocating

I feel I need to let people know this…I have been extremely fatigued for years and it was put down to RA/PSA and Fibromyalgia.
Over the course of the last year, I had regular bloodwork done for these conditions and subsequent treatment with methotrexate and Humira, where the pathologist had taken the time to remark along the lines of, “hepatic and splenic abnormalities. Requires further investigation.”
I even asked my doctors about it and they didn’t consider it worth following up. It was assumed the abnormalities were due to the dMARD and bDMARD.

My symptoms beyond fatigue

Well. No. They should have ordered a CT scan and ultrasound on the liver, pancreas, and spleen. Over the last three weeks, I had deteriorated into severe abdominal pain which was from blood pooling behind two blood clots in the liver and spleen. No appetite, nausea, fever, a dry cough, extreme fatigue, tender enlarged gallbladder, enlarged liver, enlarged spleen, and pancreatic lesions together with deathly white ice-cold feet should have sent alarm bells screaming in the direction of thrombosis. But it didn’t. They discharged me from hospital and a week or so later I ended up back there because nothing had changed.

Appointments and answers

Now the thing about this type of clot is they are quite rare. In fact, they are found only in patients with a very specific type of illness. After significant testing of everything under the sun, with many more tests to follow and a heap of outpatient appointments for several specialists, it turns out I most likely have a blood disorder from either leukemia or lymphoma.

Be your own advocate

Do NOT accept fatigue as a symptom of RA or PsA if it doesn’t stand on its own. Look at your digestion and appetite as well as how your stomach feels and if you develop a cough. If it turns out you only have another autoimmune condition then fine at least you will be able to be at peace knowing you don’t have cancer. I accepted the fatigue and tried to work around it. I was bullied for being lazy among other things by my own family and doctors telling me I needed to lose weight (I put on weight when I started taking prednisone and it got worse with Humira until I started losing it when I got sick).

Sadly we need to be our own advocate especially when medical professionals let us down.

I cringe with horror when I think about how long this cancer has been left to progress over time. I don’t know how much time I have left or even what the survival rate is at the moment but one thing I do know is the government needs to stop telling doctors they are over-servicing their patients and doctors need to seriously listen to their patients when they tell them something isn’t quite right.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • KelliS
    2 months ago

    I’m sorry to hear of your troubles. It can be a mine field to navigate health problems. I’m a Zebra and have suffered greatly as well as lost what I spent my life earning because of a broken health system. I hope you find a great doctor who can get you many more years. We need to let doctors make the decisions, not the insurance companies or government.

  • Eileen B moderator
    3 months ago

    Such a scary experience, @elle65au. Thank you, so very much, for sharing your story with our community. I have no doubt it’ll help others!

    Although I don’t know if you have a final diagnosis yet, I’m sharing a link to our sister community for Blood Cancer, https://blood-cancer.com.

    How are you doing? I hope you have a diagnosis and are on a healthy path. Hugs. -Eileen, Psoriatic-Arthritis.com Team

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