Shingles and Hidradenitis Supperativa.

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I have a disease called Hidradenitis Suppurativa in the groin area, which effects the glands. I'm stage moderate 2 and scheduled for surgery to have glands removed sometime in July. The recovery time is about 14 weeks. The symptoms are very simular to shingles. The last week or two I had a headache non stop with no help from pain meds, extremely tired, and joints aches. Weds I woke up to what seemed like a possible flareup going treo my breast now. I looked like a hive but burned and stinged very much. A few days later I noticed a few bumps there. Now I'm sure its shingles. I have a small area about the size of a quarter. So far the pain hasn't been as bad as my HS, but this took me back by a huge surprise. I'm sure that its a mild case thank goodness, but I am confused as to why straight accross my site the right side of my rib area keeps hurting too. Can anyone tell me if they have had this and what can I expect next? I have a apt. with my derm on Monday to discuss the surgery and he will see it then. Its the unknown and feeling so ill that is the hardest part. The pain from HS is so severe that if I do have pain from this, my body has become very tolerable to it. What happens after the bumps dry over? Does the pain stay?

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  • Posted

    Hi Barbara. Don't know anytthing about the HS I'm afraid but shingles, (Varicella Zoster) tends to strike when we are ill/unwell/stressed. It usually affects one side of the body only but occasionally both sides I believe. Did you get any anti viral meds from your doc? They are effective when taken within 72 hours of outbreak beginning. The pain can be severe and continue after rash has gone, (PHN or Post Herpetic Neuralgia). Shingles affects the nerves, it hibernates after chicken pox and breaks out as stated above from dorsal nerve near spine. If Merry Juliana sees your post I'm sure she will come on with more info as she is a nurse in the US who's had it herself on and off for years. You should be resting/sleeping as much as poss while you feel so ill as trying to power through it will just make you feel worse and it could last longer. Take care and REST! Best wishes, Pollyanna UK x 

    PS, a dermatologist may be able to prescribe pain meds or gel for the skin.

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  • Posted

    Hi Barbara111211,Gosh,poor you.I have lots of experience with HS because my ddaughter has had it for the past 12 years or so.Since her last spinal op ,which left her with a large lump on her back.It was infected with staph aureus .Since then these painful lumps about the size of a  walnut grow,come to a head and burst.They occur mainly where her skin is warm and sweaty.She hasn't had any get to the to the open wound stage recently.I think it's the magnesium in the deodorant ,so now she has otc magnesium one a day.Don't have too many of the lumps now.Shingles is what \i have at the moment.It's important to get an antiviral as soon as you see the rash/blisters begin to appear.Then some painkillers and gabapentin,for the nerve pain.If you talke the antiviral,there's less chance of the pain hanging around .L Lysine can help with that too.Incidentally,youe symptoms that you mentioned at the strt of your post reminded me of fibromyalgia.Have you ever been tested for it?

    X Beth

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    • Posted

      Hi Beth, I am seeing my derm on Monday and will get those meds for sure. My case seems to be very mild thank goodness I just hope its not a fluke and gets worse before then. Yes I have been tested for fibro and I do have it, with arthritis and spondylosis. They seem to go with HS a lot. Please let your daughter know that I run a support group for HS and have people from EU on it too. She is welcome to join and gets a lot of info to help her also. I am completely drained and have been doing nothing but resting. Thank you so much for giving all of the information. This is a new thing to me. I'm not sure if I mentioned it but I am 53 with lots of stress right now and I do believe it caused this. 

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    • Posted

      Barbara-I'd be very grateful if you could send me a link to your support group-knowlege is power,and all that :-) Resting is probably the best thing you can do right now.Makes me laugh,the people who say keep exercising-and some of those are from the medical profession.The body knows what it needs and resting allows it to heal a lot. Are you taking a large-ish amount od vitamin D? You should be.Most peope in this country are deficient in it and it does help to heal soft tissue and promote growth.When I told the consultant who did the bone scan on my daughter(who has no oestrogen,so at risk of osteosporosis) that the gyno doc wanted her to take HRT to protect her bones,the consultant said she could give her large amounts of calcichew D and it would have the same effect but with less side effects.I was rather relieved.The Vit D also makes her heal really really fast and her hair is thick and grows so much it's down to her bum before I can get the scissors to it.Likewise her nails.Stress does cause your immune system to be depleted.That's when the rather narsty herpes zoster virus rears its ugly likkle head and moves along the nerve it's been lurking on since you were 4 or 5-and causes shingles.I'm glad you're seeing a doc on monday.Get them to have a good look at the rash-and give you antiviral if they think it could be the start of shingles(you have 72 hours to get the antiviral from when the rash appears.After that,it can be inaffective.Get it anyway.

      good luck  Barbara.

      XBeth

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  • Posted

    my computer went crazy writing that last post and deleted the fact that Dove deodorant Invisible stick liberally applied seems to stop these nasty lumps from coming to a head and they disappear quite quickly.It seems to be the magnesium in this particular stick deod that works.
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  • Posted

    Hi Barbara!

    Hopefully, you have seen your dermatologist, been diagnosed and started on an antiviral, and been educated by your dermatologist.

    I am a Nurse Practitioner in the States and have had Herpes Zoster Shingles in my right ear every three to five weeks for the past twentyone years. I have also diagnosed and cared for several patients with hidradenitis suppurativa. I know it is not a common disease.

    Regarding herpes zoster shingles, you certainly had the classic symptoms preceding the rash and pain. As others have stated, you get shingles when your body is stressed and rundown.

    The vesicles-blisters will scab over. Once they do, you are not longer contagious. You need to rest and sleep. I doubt with HS😞, you have much energy anyway, but please do not try to power through this. The virus is circulating throughout your entire body, hence the symptoms. Eat nutritious foods, and take off from work. You probably have severe pain from HS, and the burning, lancinating pain from Herpes Zoster Shingles can become worse within the first couple of weeks. Please obtain stronger analgesic medications such as an opioid from your dermatologist.

    I am sorry I did not respond immediately to your post. I was traveling and out of range of decent quality internet connection.

    Best Wishes

    Merry Juliana

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    • Posted

      Hi Merry and thank you so much for responding. Yes I did see a derm yesterday but he wasn't my normal one. Because its a small area under my breast area he tried to tell me its' HS. Trust me I know how that feels and Everyone else has said yes it is shingles. My appointment was very frustrating. As for rest all I do is sleep. I've never been this tired since being pregnant years ago. The blisters are scabbing over but there are still a couple of new ones. My main Derm specialist will be calling me either tonight or tomorrow. I'm on the list to have surgery called CO2 laser sometime in July to have serveral glands removed in the groin area. I've been suffering with this disese for the last 7 years. when he told me yesterday that he thought is was HS I nearly hit the floor. I can send you a photo in private and show you what it looks like. My case if very mild, but the feeling tired and ill from it has been the worst. You have helped me so much. I also run a HS support group and have people from the states to the UK and EU. I spoke to some of the people from my group who has it in the breast area and showed them photos and each on of them said Oh Barb, that isn't HS it really does look like Shingles. Again thank you so much for your advice and information I found it very helpful. 

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  • Posted

    Hiya barbara111211.

    Have you heard back from your regular dermatologist ? If so,what did they say?Did they comfirm shingles and give you the antiviral? I mean,, you and I know that HS is not like a blister and it doesn't scab over-it either erupts or shrinks and maybe comes up somewhere else if you're unlucky.H.S. has a baseline large footprint of a 2p piece/50p piece and shingles is like drops of rain in contrast,but more of them.Hopefully you got some nerve meds too?

    X Beth

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