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Feeling like you are getting the flu with scleroderma?

flu scleroderma feel sick

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#1 Ron


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Posted 24 August 2015 - 08:57 AM

I wonder here how many people some days feel like they are getting the flu with SD?  My story, some days, I get really aching all over and feel like I am getting the flu.  Then the next day it goes away.

A SD doctor told me this is common, and she explained it was not just people with SD, but all diseases in this category.
Anyone else experience this?

I have it today, but hoping it goes away tomorrow, or else it could be the flu.

#2 Joelf


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Posted 24 August 2015 - 09:46 AM

Hi Ron,


Well, I certainly did feel unwell in the beginning with Scleroderma and the aching and fatigue were quite bad at that time.


Thankfully, it has stablised now and so I don't get the flu-like feelings at all now.


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#3 Ron


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Posted 25 August 2015 - 05:19 AM


I feel great today.  I remember back in 1992 my scleroderma specialist told me that people with autoimmune diseases get feeling of unwell, like aches all over and feeling like you are getting the flu.  It sometimes lasts a few hours, or a day.  But never more than a day.  Sometimes I can't tell if I am getting sick or its just scleroderma acting up.

#4 Shelley Ensz

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Posted 25 August 2015 - 11:55 AM

Hi Ron,


I have scleroderma in overlap with many other autoimmune diseases, so its very hard for me to tell what's causing what.  I can feel very flu-like often, which I attribute (rightly or wrongly) to fibromyalgia, as that can cause a head-to-toe aching and just plain rotten feeling, along with fatigue.


The way I tell it apart from the actual flu, is that my temperature is higher with the flu, and eventually with the flu there are more symptoms. If you are taking a lot of NSAIDs, they can suppress the fever, so sometimes I need to stop certain medications for a bit, to be sure that I'm not suppressing a rip-roaring fever of any sort.  We're all different, but it is normal for some of us with some autoimmune diseases to experience mild temperature elevations without having an acute infection. Therefore, you need to know your normal temperature pattern (high or low or various times of day) to be able to detect a significant change.


Generally speaking, just feeling rotten with scleroderma from time to time is normal. But a new onset of rottenness can sometimes signify complications setting in, such as anemia.  Of course, it would help an awful lot for a person to actually be diagnosed with fibromyalgia in order to assign symptoms to it, so nobody with scleroderma should merely "assume" the reason for a significant change in well being is completely harmless.


It basically takes a lot of time, patience, and a certain amount of guesswork and doctoring to figure out our own individual symptoms, and whether they are truly worrisome or not, or to know when they tip the scale into being worth a call to the doctor or a visit to ER. 


With chronic illness, we often try to avoid rattling the cage of the healthcare system unnecessarily, don't we?  When I'm uncertain if it is serious enough or not, I call my insurance company's nurses line. They have often been astoundingly helpful!  They have reviewed all my symptoms, and in some cases advised me of home remedies I could do. They have told me I could avoid ER but needed to see my primary care doctor within a day or two. And, they have ordered me to go straight to ER, advised me as to whether I could drive myself or needed to take an ambulance, and sent advanced paperwork to the hospital.


Altogether, they have spared me a lot of sleepless nights just wondering what was wrong, or figuring out what level of care the symptom required.  You may not have such a thing in Canada. If not, you may have a nurse's line or hospital ER department you could call and ask for a triage nurse, if something arises that is a bit more troubling than this particular round.  And I'm pointing all this out, of course, for others who stumble upon this thread at 3am, wondering if they have the real flu, or just another rousing go-round with scleroderma.


I'm glad you feel great today, and I hope you feel even better tomorrow. The marvelous thing about scleroderma is that whenever we have a bad day, a better one is often just around the corner, which always give us something more pleasant to look forward to.



Warm Hugs,

Shelley Ensz
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#5 Ron


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Posted 25 August 2015 - 03:49 PM

Thanks for the words of wisdom Shelley.  In Canada, well where I am located he have a number we can call, 811, they are registered nurses that can take all your symtoms and advise you what to do.  They don't diagnose. Tell you if you need to see a doctor or go to the ER. They were very helpful when I was really sick with that intestinal virus.

#6 Amanda Thorpe

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Posted 12 September 2015 - 04:10 AM

I just read this and I have had this as well. I just figured that it must be the scleroderma as it happened so frequently. I have felt like I have a raging temperature but haven't. As you say it goes away, pity it can't take the scleroderma with it. 


Take care.

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#7 Sweet


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Posted 12 September 2015 - 05:50 AM


I know this feeling well.  It's usually happens when I've over done things. If I can rest then normally the next day it has gone away.... at times it lasts a few days.

Warm and gentle hugs,

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#8 Buttons


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Posted 12 September 2015 - 08:12 AM

I got the flu like feeling lots at the beginning and thankfully less frequently now but like Sweet says its normally after I've done too much & so I need a good few days too get over it.



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