Herpes Simplex and Fibro...please help!!

My fibromyalgia started, I believe, when I was 11 years old and had a massive bout of herpes simplex in my nose, eye and roof of my mouth, I have never been well since. I am now 27 and been diagnosed with fibromyalgia after ridiculous amounts of tests and scans...basically it's all in my head according to my GP.

I am currently living in Denmark and at this moment a "golf ball" under my right chin is making swallowing hard. This usually means a bout of herpes simplex is on its way which will quickly follow by no mobility, hardly no speech and completely oblivion (fatigue). Does anyone else suffer like this??

On a day to day basis I am ok, i combat the daily struggles but generally can cope with the insomnia, sweats, itches, joint spasms and clumsiness!! Help please xxx

7 Replies

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  • You may be able to get Acyclovir treatment in Denmark, which will cut the attack short.

    In the UK, GPs rarely prescribe it for Herpes Simplex as the drug is very expensive - they will only prescribe it for Herpes Zoster (shingles) which is considered more serious.

    However, they will prescribe Acyclovir for people with HS if their immune system is compromised and that might include a fibro sufferer.

    I don't know what the prescribing situation is in Denmark, but I guess you should see a doctor asap, and see if it's available.

    Hope this is helpful, and that you will improve soon.

    Love Moffy x

  • i have shingles and it never leaves me i am on Acyclovir i have 2 tablets a day.. This does not stop the shingles but it helps some of the symptoms . Its a nasty thing and unfortunately i have quite severe nerve damage because of it so you must get it treated . I am due to have the vaccination injection ( new to the uk) next week perhaps this is an option its called Zostavax I have no idea how successful the vaccine is I have been told it may not work as I have had my condition several years but i do know it has been successful in usa who have not had the condition for more than a coupke of years best of luck x

  • Thank you for your responses ladies, I failed to mention I take famciclovir everyday and have done for the last 7-8 years but it doesn't seem to be helping lately...

  • If your anti-viral therapy isn't working, you urgently need some more investigations. If your doctor thinks it's all in your head, then he must be out of his! You don't get symptoms like yours unless something is very wrong.

  • Thank you ladymoth! Hasn't been the best few weeks of my life but determined to stay positive...I have too!!

    Got another trip back to the Danish a&e to see if they can do anything...if not it will be a flight home!! Nite ladies xxxx

  • Thank you ladymoth! Hasn't been the best few weeks of my life but determined to stay positive...I have too!!

    Got another trip back to the Danish a&e to see if they can do anything...if not it will be a flight home!! Nite ladies xxxx

  • i have twice yearly reviews with the immunologist and he often switches my medication perhaps you do need a review to remain on a drug for 7-8 years is a very long time . I have the date for my vaccine 27th Feb i will try and remember to come back to you and tell you how it went (worked etc) so you may consider it as an option x

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