Newly diagnosed questions

Posted , 5 users are following.

Hello All,

I was diagnosed for the first time, age 47, in early January 2018. Oh Joy! Knock on wood, I've had/still have(?) a very mild episode, at least I think that's what I would consider it. I first noticed what seemed like an insect bite on my lower left back kidney area, and truly thought nothing of it at first because it didn't itch much. But what didn't think was normal, was the swelling and soreness in the crease of my leg, (as you sit), from the outer thigh to the groin area. This itched like crazy, though had no red marks. I thought perhaps my exertion from snow shoveling was the culprit, but have NEVER felt nor had anything like that in that area before. After a couple of days, more red splotchy red marks began to form along the same area, and headed around to the front of my left side. The prickly sensations started, and the rash area began to get more itchy and sore. I wondered if something was up with my ovary, but hoped things would go away on their own, yet monitored them. I looked up the rash and was concerned about shingles, so very luckily made a b-line to my doctor, where they confirmed my fears. I was given Valacyclovir 3x/day for 7-10 days, I can't recall, and a one page handout with information. 

Things have been relatively easy going, with pain controlled by 2 Aleve, and I keep the areas covered with a breathable sterile gauze, in between cleaning, for a good two weeks, expecting the worst. The blisters were very small, never really burst, even opened per say, and haven't crusted over. It would seem as though they are diminishing from within. The big splotches around these clusters, is now gone, though the darker red blisters marks are still present. No more itching, or pain. 

So, in going back to attempt to identify the traditional signs that an episode is coming on, I'm  unsure. I'm generally extremely exhausted, bedridden to a good extent, and in some form of soreness nearly every day, from my mental health battles, so can't say I would have recognized anything in those terms. However, my left shoulder, from the collar bone out was abnormally sore two weeks ahead of everything. Quite painful, with a burning sensation that went from under my ear, my neck, out on top of my shoulder, down to the top of my hand, intermittently. This is more so than from shoveling snow, and not from anything else I can identify. The pain is much better now, but still lingering some.

So fast forward to the past three or four days. I've been running a temperature just over 100*, or just under 100*. This IS NOT TYPICAL for me at all. I'm even hard pressed to register normal most times, and can't remember the last time I ever got a thermometer to register 100*. My skin, normally fish belly white, has been red flushed, and I've been feeling very hot, under the weather, but nothing major I suppose? Lots of people are battling the flu where I live, though being that I'm not around people hardly ever, I doubt I have it, this is very different, and think it would have taken hold by now anyway. The other very odd sensation I'm having that I cannot fathom why, is a strange pain that is originating from the same leg crease area, but now shooting down to about mid thigh towards my inner thigh. Or, in the same area as the hip flexor. This weird pain that's very hard to describe, is it shooting, or stabbing, or tweaking, or as if a taut rubber band is pulled suddenly? It happens with any leg movement, similar to how the hip flexors are initiated, and even when I'm standing still. It has been getting progressively more noticeable the last two days, to where I'm wondering what the heck may be going on. Is this the shingles virus still affecting me, but now in new areas? Or coming back in a different area, though on the same side of my body? For now, I see no rash, and am not itching, just feeling under the weather, feverish, and this creepy leg sensation. I'm so confused...

So, thank you for reading all of that! I hope I've explained things well enough for someone to  let me know, if perhaps this is shingles, and if again, I need to head to my doctor asap. And of course, it will be the weekend, and my doctor not available over the weekend, go figure, same as the  first scenario. Mercy! I greatly appreciate your thoughts! 

A little more too that may help. I have HSV1, no cold sores on lips, only a tiny bump on the genitals,(knock on wood), and very thankfully, I've not really experienced  a full blown episode that I would say. I don't take regular Acyclovir unless I think I may be experiencing certain symptoms, though still inconclusive. I must have a weekend immune system perhaps, because in the event I come within 15' of someone with a bad cold, etc., almost sure as s**t I'll get it. I get very, very ill, and for long periods of time, taking a good two months usually to fully recover. This could also be that I rarely leave my house, nor am around people...stupid mental health reasons. Hopefully, that gives extra information, that may help you, help me figure out what's going on. Is it shingles? Isn't it?

Warm Regards,

Keli

 

1 like, 6 replies

6 Replies

  • Posted

    Hi there. I have had shingles twice and have them now though I'm getting over them. I think if I were you for peace of mind I would just go back and see the doctor and explain to them just what you have said to us. I know what a night mare shingles is. I'm sorry that you are going through this. Diane. 

  • Posted

    Hi Keli,

    I acquired a severe case of shingles Nov 2016. Since then, I have posted quite a lot on this site, a great site as you will discover. I'm not a medical practitioner so I can't diagnose your symptoms, but I can tell you that shingles can leave a person with a weakened immune system and generally damaged. I know that I was left with PHN and although it is far better than it was, I still have nerve pain after over a year. Also, my entire body is more sensitive now to irritants and viruses. If I don't sleep enough or if I am extra stressed, I collapse for a week. So, I think what you might be experiencing is that general weakness and exhaustion that might strike you as a recovering shingles sufferer whenever your immune system become overloaded. 

    Also, shingles causes extra anxiety in many people. I was left with an anxiety disorder after my bout with shingles. Anxiety can cause me to experience body 

    aches and pains and other physical symptoms because I am so nervous and stressed out sometimes. You might be having anxiety related physical health problems too.

    I hope you feel better. It is a struggle to deal with the after effects of shingles. 

    Many of us can become too obsessed with worrying about whether shingles is returning. But, if you're really concerned, go to urgent care or find a doctor who actually understand shingles and ask to be tested for the flu or the other possible reasons for your symptoms. 

     

    • Posted

      Hello Tiffany. Thank you for responding. You did a great job of explaining shingles and the nightmare of living with and through them brilliantly. Diane 
    • Posted

      Tiffany,

      I can relate to all of your problems after shingles with the weekend immune system, anxiety, PHN etc... I had shingles one year ago and have since then suffered from fatigue, severe anxiety, nausea and what I think is recurrences of the virus but without the rash (the painful skin, body aches and flu like symtoms come back regularly but without the actual rash fully appearing). I am so ready for this to be over and to start feeling like my old self again.

       I would love to know how you are feeling today? 

  • Posted

    Thank you all for responding. This has got to be one of the most confusing illnesses I've ever dealt with! I think I'm just trying to figure out if this new, weird leg pain that I'm having, plus the low grade fever is the shingles 'rearing it's ugly head' still from the first episode that began on January 19, 2018, or another one beginning. I didn't have this kind of leg pain in this area before either, though it's on the same side, and just under the previous area. There's no rash or itching at the moment, and even just sitting here I can feel it. I just completed a virtual Dr.s appointment, and am waiting to hear back from them, so hopefully that will be helpful. Though as, many of you have said before, the medical community is sorely lacking in their knowledge of this. The first doctor I went to barely looked at the rash I had, confirmed shingles, sent me away with Valcyclovir, no pain meds,(didn't discuss them even, though thankfully I wouldn't have needed them, but didn't know if I would have at the time), and a single sheet handout of information. She said nothing of what I could potentially be in for or how to handle any of it. Ridiculous! That's when I found this forum, which I'm grateful for. 

    Tiffany, as if I needed any more bs in my life, such as shingles, I've spent a lifetime battling with severe anxiety/ depression, etc! Oddly enough, my attitude upon the shingles diagnoses, was "What else can you throw at me - damn life, the universe, whatever, bring it!?" It hasn't affected me negatively,(knock on wood), in a mental way like I thought it would, and I'm hoping out stays that way. I think many issues people develop from having it, are ones I'm already very 'schooled in', so to speak. I already rarely leave my house, and am not around people much, so that takes a huge component away for anxiety and depression. I have not dwelled on it much either thankfully. I'm at a point in my life to realize that I have no control over certain things, and no longer give my energy to them, and this will be one of those. I got shingles, nothing I can do to change it, so I better learn to live with it as best I can. Of course, all that may go out the window if I get really severe episode! HAHA! What I don't like is not knowing what to expect, because it affects everyone so differently. Not being sure if any symptom is a 'shingles' one, a cold/flu, or the myriad of ones caused by my mental health like extreme fatigue and physical pain, and do I need to rush out and refill the antiviral before all hell breaks loose. However, I got a taste of how different the pain may be, mild as it was, and I cannot begin to imagine it full force. OMG! 

    Again, I greatly appreciate all your thoughts and support! It's really wonderful knowing I have this resource. 

    Sending you all positive healing energy!

  • Posted

    Hello Keli,  First off, thanks for sharing! This site has been very helpful for me and many others. 

    First off, Shingles is much more complicated than most doctor's know and there is definitely information lacking.

    However, Shingles hits different people, in a variety of ways and severity. Even though you may only have a rash or outbreak that seems a short period of time, the virus is in your system and can erupt for up to 3 months. Some unfortunate folk like myself have reoccurring shingles, so I have an outbreak on my lower back or buttock every 3-4 months. (Never as severe as the first, which will be 3 years ago this June). Now I get a small patch that is accompanied by feeling extremely exhausted for weeks. The good news is as soon as I haven't had an outbreak for close to a year, I will be able to get the new vaccine, which is apparently 90% effective in reducing outbreaks and its symptoms. My doctor gives me a monthly renewable prescription for anti virus med's so I can start taking the medication as soon as I suspect an outbreak. I also take Lysine, Tumeric, Vitamin B daily to keep my immune system strong. Eating clean and getting lots of sleep at night is also very important. Try to decrease your stress levels as much as possible. So, to answer your question, you probably still have the virus in your body.....hope I have answered your questions. PS I take Trazadone for sleep and Tramadol for pain...

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