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Sclero flare


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#1 pieski

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Posted 02 December 2008 - 04:37 AM

Is there such a thing? I sure feel like it.
~ Teresa~

#2 janey

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Posted 02 December 2008 - 06:41 AM

Teresa,
With scleroderma and many chronic illnesses, the disease can go up and down. We all have those days that are cloudy, but then we may have some sunny days as well. I know when my disease is acting up because I breakout with a facial rash. Sure enough, once the rash starts, so do the fatigue and reflux issues. Shortness of breath can also increase. It goes for a few days then improves. So I guess one could call it a flare. I just know to take it easy on those days and let it play itself out. If it doesn't improve, it's time to call the rheumatologist.

The hope for all is to have more of those sunny days and fewer cloudy days.

Big Hugs,
Janey Willis
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(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
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International Scleroderma Network (ISN)

#3 canon

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Posted 02 December 2008 - 04:00 PM

Teresa,

Flare is a good word for it because that is the way it feels. I agree with janey. The articles I have read on the topic say we with sclero don't have flares, we have disease progression but to me too it feels like a flare whether it progresses or not. My face flushes more, then the joints ache more and the reflux goes with the red cheeks too for me. When it gets really bad I make a phone call to my rheumatologist specifically for the joints. Hope you find relief soon.

With gentle thoughts,

Judy
A happy heart is good medicine.

#4 Shelley Ensz

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Posted 02 December 2008 - 05:16 PM

Hi Teresa,

"They" say there is no such thing as a sclero flare. However, I daresay "they" don't have scleroderma.

But, "they" do have medical degrees, and I certainly don't, so I can't argue it effectively. Just to say, for me, there are certainly times I am much worse off than others, sometimes for days, or weeks, or months.

But, if you go to your doctor(s) and try to tell them you think you are in a flare, they will tell you there is no such thing. So it is better just to state what symptoms are causing you new or more problems or concerns, than usual.

Then let THEM use the verboten "flare" word...it seems to be okay if they use it, but not us. Go figure!
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.

#5 ozzy69

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Posted 03 December 2008 - 06:25 AM

I agree. It feels like flares to me. I get sick every 4 to 5 weeks. It always starts with a sore throat, and I feel really bad for about a week or two.

Nina Lynn

#6 CraigR

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Posted 03 December 2008 - 10:12 AM

With a disease like this you're on your own. Your doctor does not live in your body. Such dogmatic doctors are often foolishly close-minded. Many times new knowledge has proven the old dogma to be nonsense.

And in addition - how can they claim to be so knowledgeable about a disease that seems to manifest differently in each case?

Years ago a doctor told me that there was no possible genetic cause of scleroderma - yet my father had the disease!

4 years ago I was hospitalized with raging pulmonary hypertension, at one of the top centers in the U.S. for treating PH. After two weeks it went away, or rather, back to my normal, mild PH, and I could breathe just fine. The doctors insisted that it was impossible - like they were mad at me for contradicting their knowledge. I found it hysterical!

The ESR (Erythrocyte Sedimentation Rate, "Sed Rate") is a common, low cost blood test for non-specific inflammation. Should be under 20, I believe, but your "normal" may be higher with scleroderma, Sjogren's, etc. (mine is about 40). Funny how, for me, it spikes way up to about 80 when I'm having what seems to be a "flare", and they can find no other cause.
My main symptoms are fatigue and myalgia.

I recommend tracking your sed rate with how you feel. It can give you some insight into your state of inflammation. Since it is non-specific it can detect inflammation from anything (arthritis, influenza, cancer, etc.), but can be a useful window for those of us with inflammatory diseases.

Craig

#7 debonair susie

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Posted 04 December 2008 - 06:02 AM

How true, Craig...how true!

So many doctors and their egos...or is the contraindication of our disease(s) and science?!

Absolutely..there's such a thing as flares with Scleorderma...many of us have experienced it also.

Prior to my diagnoses of my various diseases, my dermy was treating my Psoriatric flare with PUVA treatments. Immediately after my 3rd treatment, my entire body, which was already 98% psoriatrically (is that a word??!) involved...caused my skin to react to the treatments by swelling and becoming even more painful, beyond the itching and burning pain I was already experiencing.

My dermy told me it just doesn't to DO that! The PUVA treatments are completely "harmless"! ....Even as I stood before him, he uttered those very words!

I went from there to the ER and received an epinephrine shot which calmed things down a bit.

A week later, I would be receiving an electromyography for what turned out to be carpal tunnel syndrome...in both wrists.
Because I had been wrestling with 70 lb mail bags, I was very strong, so the doctor didn't believe I had any more than the beginning stages..."at most"...of carpal tunnel, especially when I told him the symptoms only showed up a month prior to my seeing him. He begrudgingly performed what turned out to be a 2 hr test...when he saw the results...most advanced carpal tunnel syndrome...his jaw dropped to the floor! He then said to me..."This can't BE...you're so STRONG"!

Isn't it amazing how we can defy science and the medical books?!

As you pointed out, WE live in our bodies and these doctors of ours should really pay attention to what we are telling them about what's going on!

Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#8 Kamlesh

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Posted 04 December 2008 - 12:44 PM

Teresa,

Scleroderma flare ups are common for me. When I had severe scleroderma, at that time I would have even more severe flare ups causing high fever for 3-4 days every 4-6 weeks.
Now my scleroderma is under control, I get few days a month with more itchiness, fatigue, severe cough, etc.
Kind regards,

Kamlesh


#9 Peggy

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Posted 06 December 2008 - 08:18 AM

It's funny you use this word "flare" as I just called and talked to my rheumatologist and was told I was probably in a "flare". I would agree as the pain in my legs and arms, the fatigue and everything else is going on would fall in that category. I found it interesting when at my appointment back in June of 2008 I told my doctor how fatigued I was and she said I was the 3rd sclero patient to tell her that. She acted surprised that this was a complaint. I told her that it was a common complaint that I see on the forum boards that I visit and she said she is hearing more and more of that from her patients. I guess even the doctors who are experts in this disease sometimes have to be educated on just what is going on with us.

Warm hugs,

Peggy