Still Getting Sick After 4 Months

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It's been a while since I've posted here. It's now been 4 months since I was diagnosed with Shingles and I'm still not fully recovered. I'm posting tonight because I feel particularly bad. I don't have post nerve damage and all the spots on my forehead and eye have cleared up.

The recurring symptoms I get are deep leg aches in my upper thighs mild nausea and a general feeling of fatigue.

I've been to my Dr multiple times. The last time I went he had another Dr with him so I got a two for one. I described my symptoms and specifically asked of there's any chance any of them were lingering effects from Shingles. The visiting Dr. said that Shingles is a 'self-limiting' virus and will run its course and go back into a dormant stage. My main Dr plainly said there's no way he can connect the lower body aches and fatigue to Shigles on my forehead.

So basically neither one of them had any answers for me. All my blood work is normal, I'm not losing weight and I don't have a fever so they don't suspect the 'C' word.

He literally wrote question marks down as a diagnosis. He has referred me to a neurologist and a dermatologist.

I will say, most days I feel ok. But since March I've not gone a full week without having some sort of leg pain. When it hits me like it did tonight, I try to just go to bed and hope it's gone by morning. I know as soon as I wake up what kind of day it will be.

I've read on this site about a lot of people suffering much longer than me. It's just hard for me to compute that I would still be suffering from this virus. I've never experienced anything like it and have certainly never been sick with anything for this long.

I debate on whether to seek out a new Dr. I've even thought about seeking out Shingles specialist and flying to be seen my them just to get some answers.

So my heart goes out to everyone here who are going through this. It takes the wind out of my sails.

1 like, 11 replies

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11 Replies

  • Posted

    Hi,

    I'm so sorry for your suffering, It is 12 weeks since I was diagnosed, it was my eye, head and forehead, I have noticed that just walking for a short time sometimes makes the bottom of my legs ache , and I always think, surely I am not that unfit, but I do think a lot of the fatigue in whichever part of the body it is, can be to do with being ill for so long, I know how you feel, I too have never been ill for so long , and we all hope there will be light at the end of the tunnel and that we don't have these things forever, The worst thing I have is very itchy eye socket and forehead,especially on waking every morning, I find that keeping busy helps as it makes me focus on something else, Good luck and i hope things improve for everyone on here!

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  • Posted

    Dear Thedwp,

    My heart goes out to you.

    Many of us have long-term symptoms that the medical world do not understand. I am of that world as a nurse practitioner, but your world as a recurrent Herpes Zoster-Shingles patient. The fatigue and exhaustion are well known among other patients for months up to a year. The aches and pains that others experience are true. All I know is that the virus has circulated in your body, not just on your specific dermatomes affecting that specific area where the rash was, and affected your entire body. Where do you live and how old are you? I never can find the original information contained in these threads.

    All my best.

    Merry Juliana

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    • Posted

      Hi merry i have posted  on here before regarding the shingles vaccine and as you are a nurse practitioner what is your advice  .only i had shingles o er xmas and now the doctor wants me to have the  vaccine to prevent further attacks -but will it is my query .i am 71 years old and am on steroids as i have poly myalgia  rheumatica  and my immine system is suppressed be cause of this. What do you think  .thanks jeanb
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    • Posted

      Dear Jean,

      My heart goes out to you.

      The questions I would pose to your physician are the following:

      Should I wait for the new and improved Shingles vaccine, Shingrix, that has an efficacy rate of 97.1 %, is a killed vaccine, even though it isn't expected to be approved by the EU Medical Authorities ((or FDA) insert appropriate Drug Approval Agency..) until the end of 2016. I understand Zostavax by Merck has an efficacy rate of 38% in people aged 70 and over. It is a live vaccine.

      Jean, I can't advise you as I don't know your country, your insurance, your entire medical history, but I just gave you an idea of the efficacy rate of the old vaccine and the new vaccine coming out in probably less than a year that has an added boost or is "turbo charged." I had the Zostavax as I have recurrent Herpes Zoster-Shingles, and it did absolutely nothing for me. As you are on steroids, you need to proceed with caution, but the new vaccine is a better bet. I would ask your rheumatologist if he feels the Zostavax will give you side effects or even be effective as you are on steroids. The steroids suppress your body's reaction to vaccines.

      Also, some health systems might restrict your getting the superior Shingrix when it comes out if you had the Zostavax less than 1-2 years. These are things to think about. Sometimes the Zostavax has decreased the intensity of the pain when and if a person has had a recurrent episode, but it certainly has not helped me.

      I hope I have helped you and not confused you.

      Let me know what you decide!

      Best Wishes

      Merry Juliana

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    • Posted

      Thanks for the reminder Merry. It's always right around the time I think I've kicked it that I get hit again with symptoms. I live in Los Angeles and I'm 49. Having another rough day today. Not as bad as yesterday but the fatigue is ever present.

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    • Posted

      Ah, you are in LA LA Land! When I lived in San Diego, and drove to LA for a conference, I couldn't believe the traffic and smog.

      NYC was never that bad on the weekends, non-rush hours, etc...and I am not a Nerve Yorker! That alone is enough stress to give you shingles!

      I guess I think of recovery from Herpes Zoster-Shingles as a process, in which one must be patient with oneself. It's a learning curve, and one of acceptance. The other idea is to have evaluated the cause of pain in your legs. Is it sciatica, or some other cause? You are at the age that you could have degenerative disc disease. Just a suggestion.

      Hope this helps.

      All my best.

      Merry Juliana

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    • Posted

      Thank you so much for advice merry and sorry for delayed reply but my internet has been awkward .i live in england and your advice has helped  me to decide and i am going to wait till the new vaccine comes out and will discuss this with my gp and see if it will be available here ,if in fact we are able to get it .why the doctor did not  suggest this to  me i have no idea -but cant thank you enough and will let uou know when i see her ,best wishes yo you and all fellow sufferers x
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    • Posted

      Dear Jean,

      My Internet has been mostly down the past two weeks. I quite understand. Finally, I am home and the company fixed our service here. I do hope you start feeling better soon.

      All my best,

      Merry Juliana

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    • Posted

      Hello Jean

      My dr told me recently that the vaccine isn't availabe on the NHS for anyone under 70, and I have read that  it is around £100 to £200 to go privately!

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  • Posted

    Had the Shingles Vaccine early last year & still got Shingles last September & still very nauseous & unwell 12 weeks later.

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    • Posted

      Dear Joho,

      I am sorry you are feeling unwell, still. Besides feeling nauseated, what other symptoms are you having?

      Where was the location of the rash? Are you still having pain?

      Best Wishes

      Merry Juliana

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