WHO HAS HAD SHINGLES?

I have MIxed Connective Tissue Disease, Scleroderma, Raynaud's, ME/CFS, Fibromyalgia, Ostearthritis, Hypertension, am told by my rheumatologist to regard myself as also having SLE Lupus, as I have most of the symptoms, and also have a few other related conditions to all these illnesses.

Just had terrible scalp and head pain for the last 4/5 months, and now Shingles is being queried, as I have a rash on my scalp at back of head.

Who has had Shingles, and how did it present itself? Pain first, then rash or vice versa?

Will be grateful for any advice/experiences - thanks :)

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Still on the mend from shingles. About one month ago I started with very low bp, dizzy spells and fatigue. I then started with a few bumps on my chin. Within 12 hours they had begun to blister. The blisters were extremely painful. Shingles presented itself on my left side of face and head. Teeth pain started two days after blisters. 3 days later the rash appeared on my jaw line, blisters on my lips and in my mouth. Then came extreme inner ear pain. Slight rash on corner of eye and on ear. 5 days later I was in so much pain, I saw my scleroderma specialist who dx. me with shingles. I had the blisters in my inner ear, and the whole left side of my scalp was extremely painful. This is the second time I had shingles. The first time presented with a rash on the right side of my trunk. No pain at all. I'll be ready for round three.

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This is a website with good information about shingles, how it presents and treatment. Hope you find helpful information here: http://www.cdc.gov/shingles/about/index.html

Best of luck! Mary Beth

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Thanks Carol56, and hope you don't experience a third episode. Thanks MBCady - I have taken a look there. I looked at many sites, but it all seems so uncertain in my case, as I've had all this extreme pain for almost 6 months now, before the rash came, and my doctor is also considering Giant Cell Arteritis and Trigeminal Neuralgia, because of my other conditions.

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Maybe a neurologist consultation is the right way to go? Ask your doctor about that. Do you have a scleroderma specialist? mb

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Oh Shingles, how I loathe thee. I am only 28 and have had shingles 3 times. The first time was on the back of my right shoulder; wasn't too bad, just annoying and I was fatigued. It was about a baseball sized patch of a rash and it didn't hurt too much. The second time was on my left low back at my belt line. This was more painful as my pants rubbed on it. This one began as an aching pain and fatigue, followed by the rash. It only lasted a couple weeks. This last time was on my left abdomen, below my breast on my ribs and wrapped around the side. This time was very painful. I felt it coming before the rash, just an aching nerve pain. I went in to the dr. as soon as the rash presented. Every time I had it I was prescribed the Valtrex. My doc said since I have the history, I should come in as soon as I feel it coming because it will reduce the amount of time with the rash.
Let me know if you have any other questions!

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Hi. I have had shingles 30 time over the years. Always on the left side of my face and into my ear. If I come in contact with someone with shingles I no Im in for another round. The last couple times Ive washed the area with apple cidar viniger. It dryed the blisters up before they broke. There was alot less pain and the epasod didnt last as long. Just a side note. If you suffer from reflux or heart burn take Apple cidar viniger in warm water or pill form . My husband and I no longer have reflux. Hope this info helps you.

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Thank you all again! Interesting info indeed :) All that you guys say, and others on various other groups just proves that so much medical info is just not true! Many people have clearly had several episodes of Shingles, yet you read and are told it only occurs once! Likewise, many have had it on both sides of their body at the same time...yet you read that doesn't happen! I always go by what people like ourselves have to say on all manner of illnesses now, and don't let myself rely purely on medical folk.

Here in Scotland, UK, our Rheuamtology Consultants tend to deal with all the auto-immune issues, so I see my consultant for the Scleroderma along with the MCTD, Raynaud's, ME/CFS, Fibro, etc, and I have an Orthopaeditc Surgeon for the osteoarthritis.

Since I've had the additional head pains for 5+ months now, (and was initially told they were all just probably part and parcel of the Fibro etc, etc), I am going to request to see neurologit when I see my General Practitioner next Tuesday.

I only ever saw a neurologist in the past as I had 2 X Carpal Tunnel ops, and he did them.

No reflux problems thankfully, as I take Omeprazole and Aloe Vera.

Hope you all don't suffer any further outbreaks of the dreaded Shingles!!

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Oh my goodness, Sheila, 30 times? I thought my 3 was bad!! Larsonsmum, yes it is frustrating to find accurate medical information, so I'm glad you have come here with your questions. Be mindful of course, that not everyone experiences the same things. For example, the apple cider vinegar for reflux does NOT work for everyone. It depends on your "kind" of reflux. I have tried it and was miserable. I stick to my Nexium 2x/day and doing well with that. Also, it's not totally unusual to have shingles recur, especially with autoimmune diseases.

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Dab shingles with white vinegar and it will relieve the pain
cathy from ma

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Have had them, get them, and hate them. For me, they start with this weird, itchy, tingly feeling. Then they progress to the awful rash. I find that if I start meds immediately upon feeling the symptoms of an oncoming outbreak, sometimes the rash does not appear. I have what I surmise is pain related to nerve damage from having them so many times. I have probably had 6 or 7 outbreaks in the past 6 months.

I sincerely hope that your issue is something else and something simple.

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I have Scleroderma, Raynaud's, RA, and Ovarian cancer (2009). In 10/2010 I was diagnosed with Scalp Shingles with blisters and itching symptoms. Saw Dermatologist early and put on anti viral medication. Still have some residual mild pain over the same side eye. I do remember just prior to blisters I had a tingling feeling over that area of the scalp. After blisters the area became crusty and finally cleared. No further outbreaks. Wishing you the best.

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My case of shingles began on the way home from visiting a friend for dinner. I remember commenting to my husband that something felt wrong, like someone had tampered with my food or drink. I was dizzy and just felt weird, feverish. The next day a rash began across my upper right thigh and into the groin area, about 9 inches across and just where my briefs' lower edge pressed against the skin. Just as the blisters were forming, and with the low fever, I went to the doctor and told him I had shingles. He asked, "how did you know what it was?" I said, "Internet, of course!" I had just started a new job and couldn't miss work. The location of the blisters made walking miserable, but he prescribed a tube of lidocaine cream and a medication (I can't remember the name) which helped. I asked relatives about their own experiences with shingles and one aunt said she'd had it but took a couple of Advil and that was it. I wondered if we had the same definition of shingles! This was before I was diagnosed with CREST. It took weeks for the blisters to heal and the residual pain in the nerve endings lasted about 2 to 3 years afterward. I haven't had it again - yet - but now that shingles vaccine is available I'm planning to check with my rheumatologist so perhaps another visit can be avoided. I can't even imagine having it 30 times.

I'm in my mid-50's, and when I was young the adults used to say that if you got shingles on your midsection and it went all the way around to meet itself, the pain would be fatal. I know that was a tale based on times when modern medications weren't available, but when I had my own case I was sure remembering those stories. Larsonsmum, I hope it doesn't turn out to be shingles in your case and that you can find relief soon.

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Thank you all - not really a lot further on, but the conclusion seems to be that one doctor seems to think it could be shingles, and another thinks not. I only have about 12-16 spots/blisters in two sections either side of the back of my scalp. Annoyingly I can't see them, obviously even with trying two mirrors etc. My husband can see them though. They are extremely itchy and I still have all the pain too, but as I have found on other occasions the medical profession are very ready to put everything down to the Fibromyalgia, MCTD, Scleroderma or any one of my other 4 chronic conditions, so it can be annoying how that potentially stops them/delays them diagnosing other things. You'll all know how frustrating that is!

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I am well acquainted with shingles!!! Have had them about every month for about 15 years and they break out at the same place near my tail bone. For a long time I didn't know what it was and finally showed the doc and he said that it was shingles. I was given medication for it and took it several times and it gave me thrush which was worse for me than the shingles and had to wash my mouth out with this nasty medicine! Right now I have an out break which itches like crazy and has scabs and as soon as it heals---it will break out again. I get neuralgia with it too. I get a low grade fever too. But the docs have not given me anything that helps.

I have limited sclero, interstitual lung disease, COPD, autoimmune hepatitis, sjorgren's, raynauds's and hypertension. Hope you find something that helps. That is awful for you to have it on your face and head!!! Hope you find some answers that work!!! Best wishes!!!

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I got Shingles on my left flank area when I was 44 years old. I have not had it since but had years of herpes simplex outbreaks. I was diagnosed with Sjogren's about a year ago. If you have mononucleosis (which I got at age 17) and shingles then they are precursers to Sjogrens. Didn't know about this until I got Sjogrens and started researching.

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Hi,,,,I have systemic sclerosis,,right after I went on cellcept-couple weeks later I started with very bad pain on left shoulder and chest area,,,,never really developed a rash, just very bad pain,,,had to go off cellcept for about a month and go on anti virals,,,felt some pain for almost 9 month after I had it. All the best,,,

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I only had shingles one time and that was enough! I think i had a mild case from what i was told but it started with a rash on lower front side and then i had a small rash about the same size on my other side in the same place. It didn't cause too much pain for awhile then it started itching and burning then i went to doctor because i was also having back pain and come to find out it was caused by the shingles. The shingles was a little lower than your belly button on the left and right side.

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I have had recurrent shingles for more than 10 years-on the right side of my face,corner of my right eye.in June of last year theywent into my right eye-very uncomfortable.Since that time I have had to stop using Restasis(for the eye synptoms of sjogrens),take Valtrex daily and received the shingles vaccine.It is unusual to have recurrent shingles so they say.How unusual must it be to have scleroderma,raynauds,sjogrens along with it?Yet it does happen-we on this site are living proof.Lucky us!

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Hi Babs,

Although I did not get shingles in my eye....I can relate to some of what you are going through. I developed Essential Iris Atrophy in my right eye 10 years ago. Eye pain is pretty intense-it can make you nauseated, feel disoriented, and if there is any distortion make you prone to falls. I hope you get better soon...you will be in my thoughts and prayers..

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Hi. I have had shingles 3 times in my life. Once when I was 20, the other time at 38 and now at 46. Stressful situations, as far as I can tell, are the cause. I have been diagnosed with limited (CREST) scleroderma, fibromyalgia & the "onset" on lupus - whatever that means. The reason I was tested for the lupus was from scaly bumps on my scalp. These are not related to shingles because my shingles outbreak this time was on the back of my upper right thigh and the scaly bumps on my head are all over my head. Usually shingles is limited to one side of the body. I suggest you ask your doctor about being tested for sjorgrens and/or lupus. That's just my opinion. I had no idea that was going to be the outcome when I mentioned the bumps and rash on my scalp to my rhuematologist. I wish you luck and good health!

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