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TGK

Immune dysfunction post infection/illness/trauma?

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Hey y'all, 

 

I've just joined the forum after finding great comfort and info through it these past 6 months. 

 

I began having GI issues, reflux, arthralgia, and other systemic issues following a serious illness I developed while living in a rainforest in the Caribbean last year. My initial illness consisted of sudden fever (104+), rigors, joint, back, head and abdominal pain. This fever lasted 4 days then resolved only to return one month later - and again one month later - and again one month later until I finally flew back to the states to seek health care, expecting a quick diagnosis and cure. That was September 2017.  Now, 9 months since my return and over one year since that first fever, I still have no idea what is wrong with me. I am a 27 y old female and was a farmer prior to this and am still unable to return to work due to the arthralgia, exhaustion and morning stiffness. Following the last fever in August, the joint pain never went away. I began to develop severe reflux and GI issues. I had already had Raynauds for 10 years but began experiencing new changes in my hands.

 

The doctors could not find any current infection but did find that I had a positive ANA, depressed C3 and C4, Eosinophilia and a positive Anti-Fibrillarin Antibody. All of these remain this way today. I currently have a diagnosis of Undifferentiated Connective Tissue Disease with leanings towards Scleroderma. 

 

I have become fixated on finding the cause of my initial illness, though understanding it may not help treat my current situation. 

 

My question for y'all is if anybody else began experiencing symptoms following an infection/trauma/illness?

 

The last day of the initial fever I hiked to a place with a cell connection and learned my former boyfriend and best friend had died unexpectedly a couple days before. It was several weeks later that the fever returned and the cycle began. I wonder if the combination of the infection and the trauma could have "fried" my immune system. 

 

Alternatively, did anybody's Scleroderma begin as recurrent high fevers? I want to keep an open mind and a broad differential. 

 

Thank you so much for reading this and am looking forward to any experiences/insights y'all are willing to share. 

 

With Hope,

T

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Hi TGK,

 

Welcome to these forums!

 

I'm sorry to hear that you've been suffering worrying and unpleasant symptoms and are concerned that you may have scleroderma.

 

Unfortunately the nature of autoimmune problems in general and scleroderma in particular means that obtaining a definite diagnosis and finding the actual cause of the disease is notoriously difficult, as it affects everyone differently and varies in intensity in every case. It can be a very frustrating process (as many of our members can testify). So many factors can be involved and whilst I can understand that you're keen to find an explanation of the disease, it can be counter productive to let it become an obsession, as this could cause more stress and anxiety which in turn can exacerbate the symptoms and make the whole situation worse. Thankfully, I've never experienced high fevers either before, during or after contracting scleroderma.

 

We do recommend that our members, if possible, consult a listed scleroderma expert, as this complex disease requires specialist knowledge and expertise to deal with all it's little idiosyncrasies. 

 

Kind regards, 


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi TGK

 

You sound so much like Gareth when he was initially diagnosis'd, at age 18 - UCTD with + scleroderma blood work.  He also has immune deficiencies and if you haven't been tested for that,  I would strongly suggest it due to the recurring fevers.  He has no IGg 2/4,  plus a MBL deficiency - both needed to fight bacterial infections.  It's one of those *did the chicken come before the egg?* scenarios.  He had always been a sickly kid, but did the immune deficiency cause the autoimmune disease?  Anyway, he gets IV Ig infusions every 4 weeks to stay healthy.  

 

Take care, everyone.

Margaret

Mom to Gareth, 30 years old, DS/ASD

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I was diagnosed with Raynauds and Crest at the age of 22 years old.  Raynauds got so bad I lost part of a finger when I was 50 years old and was suffering from acid reflux and chronic constipation since I was 30 years old.  From age 55-60 I got pneumonia about 15 times.  I am 60 now and have pulmonary fibrosis and I also have IVIG therapy every 4 weeks for the last year.  My immunity was never good but worsened the last 5 years.  I had to go on disability a year ago.

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Hi Treesie,

 

I just noticed that this is your first post. Welcome to Sclero Forums!  I'm very glad you found us.  You're an excellent example of living with chronic severe illness.  It's not like it's been a walk in the park for you, by a long shot. 

 

But you've made it what, nearly 40 years, with scleroderma.  I'm sure you'll have a lot of wisdom and tips to share with us in the months and years to come!

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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On ‎6‎/‎12‎/‎2018 at 11:52 PM, Shelley Ensz said:

Hi Treesie,

 

I just noticed that this is your first post. Welcome to Sclero Forums!  I'm very glad you found us.  You're an excellent example of living with chronic severe illness.  It's not like it's been a walk in the park for you, by a long shot. 

 

But you've made it what, nearly 40 years, with scleroderma.  I'm sure you'll have a lot of wisdom and tips to share with us in the months and years to come!

 

:hug-group:

 

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