Anyone else with CFS have recurrent Herpes?

Posted , 6 users are following.

I've had ME for over 20 years now. The last 5 years I have been plagued with recurrent episodes of genital herpes (an old boyfriend infected me in the 1990's).

I'm having around 6 major flare ups per year now and am on long term acyclovir but the fatigue, nerve pain and flu like symptoms are just worsening year on year.

I recently read that research into those suffering long term health conditions are prone to a 20% rise in their pain during the winter months. I have certainly had an increase since the autumnal weather kicked in

Anyone else in the same boat? Any gems of wisdom/fellow sufferers responses would be much appreciated. I'm feeling pretty low.

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  • Posted

    Skin problems are common in ME sufferers. My dad had belt of herpes many years ago and we both get very itchy skin. Sorry but i cant really offer any advise, I usually scratch my legs until the skin has gone, im covered in scars. I do have some cream that does help from time to time.

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  • Posted

    So sorry to hear that you are going through such a difficult time right now with your illness. I've suffered with CFS for 25 years now and my symptoms have definitely gotten worse the last few years due to menopause. I've had many labs done and recently decided to take hormones, including estrogen, progesterone, and also testosterone. Balancing my hormones have helped some, but I'm not doing as good as I was before menopause.

    I also find that the winter months are more difficult and my symptoms definitely flare up more often. Since you've noticed herpes episodes are occurring more often with you, I'd check you zinc and vitamin C levels. I take additional supplement including Vitamin C, zinc, Vitamin D, and Calcium. I also get Vitamin B12 injections every 2 weeks. I was never a big believer in additional supplements until the past few years. I do think they help some. Sounds like your immune system is run down. Hope this helps 😃 KPD

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    • Posted

      yes KPD, menopausal here too. Migraines 20 out of 30 days most months. Great advice about vitamins. I've been lazy with that. Going to take vitamins D, zinc and vitamins C again, rather I should take regularly anyhow! Think we will feel much better on the other side of the CFS?

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    • Posted

      Amber, I really think hormone imbalances make people who suffer with autoimmune diseases worse, so be sure to get your hormone levels checked. If you are against the idea of taking hormone replacement, there are Bioidentical Hormones (natural ones) that you can take. They are supposed to be safer. More doctors are learning about these. And before you start taking supplements, see if you can get those levels tested as well. I couldn't believe how low my Vitamin D levels were. All these imbalances reek havoc on our bodies allowing other infections to surface. Makes sense? Hope this helps. Good luck and keep us posted. KPD

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  • Posted

    Hi I have been trying to do cross stitching as I can't get out and about as I have cfs I try to do 1025 stitchs a day before my pain gets to bad for me to stop as I can't work with this so I try to do the cross stitch as a hobby so what do you do with ur time with ur cfs

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  • Posted

    Hello, Amber?

    I have empathy with your situation on several levels:

    Yes, everything gets more challenging in the autumn/winter months: stiffness, pain, immune system needs to work so much harder to protect us and, as we both know, our immune system is already malfunctioning .

    I have suffered with herpes (facial) for the past 50yrs (I'm now 60). Once I fell ill and was diagnosed with M.E., 6yrs ago now, I quickly noticed that my herpes was more active every few week as opposed to twice a year? After much trial and error with my GP on board - he suggested that I take a 400mg Aciclovir twice a day (morning and night), to 'stem' or 'stifle' any outbreak: it has worked for me although I still sometimes feel 'extra ill' at stressful times, I've only had one outbreak in 6yrs!

    I realise that your herpes is different to mine, perhaps more vicious: I understand there may be a vaccine that might help? I do not know anyone who has had this just a verbal suggestion.

    Given that, genital herpes is a sexually transmitted disease, you could try a sexual health clinic for advice rather than your GP - they do know much more in this area. You will find their address in the directory or, through NHS website.

    We all need to keep our peckers up during the dark, winter months. All I can say to you is, be your own 'best friend', do everything you can to be kind to YOU! And of course, REST, meditation (if you can practice?), I find tai chi is fabulous for de-stressing. Walking (if you are able?), anything that will help you to relax - and therefore, will help boost your immune system!!!

    Take heart - you are not alone!

    Hugs to you and warmest wishes,


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    • Posted

      thanks Jo,

      I see a dermatologist currently. I'm on 800mg x5 times per day for flare ups, otherwise like you - 400mg twice daily. I feel proper poorly when it's at its worst.

      Meditation is something I find hard to get going and keep up. Any tips?!

      thanks for your very lovely reply.

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  • Posted

    TIPS - TIPS ... you're response is common place, Amber: I too, find serious meditation very difficult. So this is why, I've started the tai chi and chi gong (alternative): it is simply, very gentle movement with a video on my laptop - youtube. I have five basic movements that I practice and as you build strength at your own pace of course, other good stuff happens!

    As I cannot go out walking like I used to - great for supporting good, mental health, I find this helps me keep up with the inner self, it keeps me strong on many levels.

    Anything, that you enjoy is being kind to yourself and this is absolutely, vital, for anyone, but particularly for US 😉))))

    Every good thing we do for ourselves, helps boost our immune system - so go girl!

    Good Luck with anything you try and do get in touch again anytime x

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  • Posted

    hi sorry for your pain atm. I've recently tested positive for herpes and been very unwell since the time i caught the virus.

    im sorry its not related to your actual post but im trying to get to the bottom of my chronic fatigue and pain. my doctor thinks its all in my head! and never been given antiviral drugs until i asked. within a few days i really noticed the difference in my general well being. i can walk upstairs without getting breathless etc...... any general info if you think the 2 are connected would be .


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