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kmbhoya2000

Update a year and a half later

9 posts in this topic

Until yesterday, my last post was a year and a half ago when I was going through testing to see if I had scleroderma. I was diagnosed with Eosinophilic Fasciitis 18 years ago, and have had lots of ups and downs over the years. The tests in August '09 didn't show anything major. Over the last 2 years, i have not "gotten over" my current flare, and since March, I have been having trouble swallowing. I have had chest pains on and off since the winter, and have had a really bad stomach. Obviously, any of this can be caused by my medicine. But next week I go for my 2nd swallowing study, I think my 5th or 6th echo & EKG, and I think 3rd or 4th PFT.

 

Since I haven't been feeling well, I was given the option of upping the prednisone AGAIN, which I can't stand because I can never sleep, and it doesn't really make me feel that much better, or trying Enbrel. So 5 weeks ago I started Enbrel. I'm hoping it will help; the warmer weather definitely helps a bit, as does seeing a little sunshine!!! :VeryHappy:

 

It's weird because I get some pills caught sometimes...and some food sems like it all of a sudden builds up in my esophagus..then I think, maybe I don't have a hard time swallowing...I don't know. I'm just tired!!!

 

It's nice to have a place to write about this, and to have support!! Thanks!

 

Kathleen

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Hello Kathleen

 

Welcome back! Tired eh...I can relate! Does EF cause fatigue are are you just tired of tests and being ill? :lol: Count me in anyway.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Kathleen,

 

Welcome back to these forums!

 

Sorry to hear you've been experiencing problems with swallowing, chest pains and a bad stomach. I do hope that the new medication you're taking will help you and you soon feel better and less fatigued.

 

Here's a :flowers: to welcome you back again.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Thanks! It's nice to be able to read what others are going through while I'm waiting to try to figure out what my deal is! EF does cause fatigue, and especially since I've been in this bad flare it's been really bad, but add 3- & 5-yr old boys and activities and work, and testing & not feeling well!!! It just adds up! I forgot I have other GI issues too, but don't want to get into details, but sometimes too much, and others not enough, if you know what I mean... :rolleyes:

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Hi Kathleen,

 

We really DO understand how difficult it must be for you! Taking care of active little boys can tire out a HEALTHY person...YIKES :o When fatigued, it's hard to stay on top of anything, let alone the symptoms you've spoken of.

 

Please let us know how you're doing and what your tests revealed?


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Thank you! I will keep you posted..the tests are next Wed, and this time, with the PFT's I will know where I stand; the last one they were in a new system and couldn't access my previous scores, and I'll know if anything is wrong in the swallowing study...

 

For anyone with swallowing issues, or esophageal issues, what was it like when it started? I have just noticeed if I eat dry things that sometimes it feels stuck, and then I can feel it all the way down...then sometimes I get pills stuck and it really hurts and takes forever and about 2 gallons of water to get them down...

 

Anyway, I guess I'll know more next week...

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Hi Kathleen,

 

Welcome back to Sclero Forums!

 

I just want to mention that Eosinophilic Fasciitis (EF) is a scleroderma-like disease, and we serve those with "scleroderma and related illnesses." EF may be so much like scleroderma in some cases that it is hard to tell the difference. I know of one case where there was a confusing diagnosis for many years as it just depended on which doctor they went to as to what their diagnosis was at the moment, which was very disconcerting, to say the least.

 

The only happy part about all of this is that no matter what happens with your diagnosis over the years, you can happily and rightfully plant yourself right here for long term support. Plus you can also outreach and raise awareness of EF in the forums, too, like explaining in your own words what the symptoms are and what it has been like living with it, for example.

 

Before my diagnosis was wrapped up with a bow, doctors used to merrily have debates about possible diagnoses in front of me. Some of their favorite topics were Eosinophilic Fasciitis (EF), Eosinophilic Myalgia Syndrome (EMS), Lupus (SLE), morphea, and, of course, diffuse scleroderma. I suspect they were just trying to prove that they knew how to pronounce some VERY fancy words. Although really they were probably trying to recall, off the top of their head, illnesses that caused skin tethering.

 

No matter your diagnosis now, please remember, we are always here for you. Okay?


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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I got all my tests done yesterday...they all seemed to go well. My PFTs were down a little, but she said not much (they were good before), nothing crazy wrong with echo, and the swallowing test went well. Now my question is do I need to check farther down in esophagus and stomach since they have been bothering me?

 

On another note, I wish this nasty rain would stop, it makes me feel terrible...

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Hi Kathleen,

 

I'm very pleased to hear that your tests went well. :)

 

Perhaps your rheumatologist could advise whether you might need any further testing of your oesophagus and stomach?

 

You could maybe send some of the rain you're experiencing over to me in the UK; we have had an incredibly dry spring and the grass seed I planted is looking very sick!!! ;) :lol:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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