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sophie

Has Any One Here Developed Shingles After Crest/limited Diagnosis?

11 posts in this topic

Hi All,

 

You made me feel so welcome after my first post on the getting to know you thread. Thank you!!

 

I had shingles just before my CREST/Limited Scleroderma diagnoses. Have any of you had Shingles before or after being diagnosed. Maybe it was just my body responding to the stress or being in a weakened state. It was awful, this on top of everything else I have been experiencing. I can't describe the pain, I never felt anything like it. I still have an outline of the rash across my back on the affected side.

 

I can not believe the amount of information I have received from reading all of your posts. I am trying so hard to accept that I have this disease, and trying to conquer my fear as well. So much to try and digest. I will be very relieved when all of my test results are in. You are all so uplifting and supportive of one another and I am thankful that I discovered this site.

 

Spanky

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spanky, I also had a very bad case of shingles shortly after a lot of my sclero symptoms appeared. that was 6 or 7 years ago. i also could not believe that shingles could be so severe or painful. i was in my thirties then and didn't think someone that age could have such a severe case. the blisters ran from my underarm down to the bottom of the foot . it took weeks to go away. i had to take baths because I couldn't stand even a gentle spray of water hitting the lesions. the antivirals didn't touch it. haven't had an outbreak since . the sclero must have weakened my immune system. i rarely get even a minor fever blister. i do try to keep my emotional and physical stresses down as much as possible, exersice as much as I can and I now eat a much healthier diet (more fruits, veggies, fish and other lean proteins, flax meal, vitamins.) i think all the effort has paid off. i am stronger now than I was then, and sometimes even" look too good" to have such a bad disease. don't get me wrong, some days I have to force myself to exercise, etc. the stress of not taking care of myself will definitely make my symptoms less tolerable. so don't give up. start learning how to be as healthy as you can be. there will always be ups and downs, but hopefully more ups.

janet

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Hi, Spanky and Janet. Shingles can appear in someone with a weakened immune system or be triggered by fatigue or stress. This article (found through a search in the ISN Newsroom) gives a good description of the disease:

 

A Young Shingle Gal What Was a 35-Year-Old Doing With an Old Person's Disease? Itching and Burning and Feeling Lucky It Wasn't Worse. Washington Post 10-07-05.

 

Very interesting article.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Spanky,

I had shingles on my face in 1997. My head hurt so bad I thought I had a brain tumor. It took at least 4 months for it to go away. I was diagnosed with Fibroymyalgia and Sjogren's in 1998. I was diagnosis with watermelon stomach which can go along with Scleroderma in 2004. I was diagnosis with CREST/ limited in 2006. I think my immune system has been out of whack for a long time. Hang in there. This is a great site. You can pm or email me if you have any other questions regarding CREST/limited.

Nan

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Hi Spanky,

 

I had shingles about year and a half after the scleroderma diagnosis and about 9 months ago. I took antibiotic and heavy dose of valtrex along with a cream to be applied in the area. It took almost 2 months to recover. I had shingles on my entire left arm including my palm which made it so difficult to do anything with left hand including driving. I had to keep my palm covered sterile cloth pad. The diagnosis was stress induced shingles. After nine months, I still have marks on skin and some burning sensation in the area. I hope your experience is not this bad.


Kind regards,

 

Kamlesh

 

 

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All I can say is, I'm so sorry for what anyone goes through with the Shingles... I had the Shingles about 4yrs before being diagnosed, and I would have rather given birth 5 times than have the kind of pain I did with the shingles....

 

Take Care.........hugs.........Donna

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I came down with shingles about 7 years ago, which was followed by an inflamation disorder that had me in bed for a few weeks.

 

I've heard that shingles can be stress related. My sister got it during her divorce, and she has no autoimmune condition.

 

Craig

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Dear Spanky,

 

 

I was diagnosed with CREST about 7 years ago, and have lived in denial for much of that time. I visited a doctor today and was told I might have shingles, so I thought I would check online to see if there was a connection. Prior to my original diagnosis og crest I did have an outbreak of some kind---itchy skin and rash, but I don't think it was shingles. The main thing I've dealt with over the years has been Raynaud's, and more recently little red spots on my fingers. Thanks for listening, and I'd appreciate any advice that you have.

 

Joyce

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Hi, Joyce. Welcome to the ISN Sclero Forums. I am sorry you have had to deal with this disease for the past seven years, but glad you have found us. This is a tremendous source of information and support. I suggest you read the article in my post above. In spite of the sort of silly title, the article has quite a lot of information about shingles and its triggers. I look forward to reading more of your posts. When you get a chance, please feel free to add something to our Getting to Know You thread at the top of the page.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Spanky,

 

I was diagnosed 13 years ago and had shingles about 2 years ago...all over my behind! What a pain. LITERALLY! LOL

 

This is an interesting question I've never seen addressed before. I wonder if the incidence of shingles is higher in the scleroderma population than in the overall population....or just autoimmune vs "normal". I personally know only two other people who have experienced shingles and they both have MS.

 

Wish I was up to take on a research project! All I can tell you is I'm so grateful that pain is only a memory...growing more distant with each passing day.

 

Laurie

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