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[prestige]

Hi ladies

I would love to hear from anyone that has been diagnosed with ME/CFS.

I explained my symptoms to my doctor who took a blood test and today he confirmed I had contracted the Barr Epstein virus. To say he was useless and giving any advice....!!!


I litterally, left the surgery in tears and called my husband.

I have googled a bit about it -but now I'm terrified of the outcome.

If anyone out there is going through the menopause and is CFS, I would be delighted to hear from you. At least if I can just converse with someone instead of a list of scary symptoms, it would ease my anxiety.


Many thanks


P

[BlueButterfly]

So you have an active Epstein Barr virus right now or you HAD it at some point?

I had that test done and all it should was that I HAD it at some point in my life...not active at the time. Never had symptoms to know I had ever had it. 

[prestige]

He basically said The test showed I had the EB virus. Hence it explained why I had nausea/fatigue/insomnia and was feeling rubbish.

He said it was the precurser to CFS and there was not a lot he could do to help me.

I just left the surgery and cried in my car

[Dotty]

Yes I was diagnosed with CFS /ME 6 years ago but it was a misdiagnosis. My symptoms of exhaustion, nausea and generally feeling unwell were actually caused by menopause! HRT has removed all the symptoms x

[Taz2]

If your virus is active then you need advice as to how you can deal with this. You will need proper advice on how much rest you need to take and how long you need to be off work if you are employed. Yes EB can lead to other illnesses but the important thing is to give your body time to recover and not put it under any unnecessary stress.You would not have this option if you have had the virus in the past.It's not fair of your doctor to just say he can't help you.

I was diagnosed with CFS which was eventually changed to fibromyalgia.

Taz x

[Katejo]

Yes I was diagnosed with CFS /ME 6 years ago but it was a misdiagnosis. My symptoms of exhaustion, nausea and generally feeling unwell were actually caused by menopause! HRT has removed all the symptoms x

I did have an assessment for possible CFS/ME over 20 years ago but the doctor decided that it wasn't that. My recurrent symptoms much improved after I had my enlarged goitre removed (I was born with hypothyroidism). Have you had your thyroid checked?

[anais]

I have had ME/CFS since the age of 27. I'm now 56. I'm housebound and need a lot of practical help, and door to door transport to go anywhere. Working? Forget it. Shopping? Nope. A walk in the park? Dream on! If you're tests show up EBV chances are you'll make a full recovery. “CFS” is a bit of an overdiagnosed dustbin diagnosis these days. Most people with ME have a similar set of quite specific symptoms. My sister had EB and made a full recovery within a year, still managing to go to work with time off here and there. ME is completely different. I had to stop work completely and I've never been well enough to work since. As for the menopause and ME, they both make each condition more difficult to deal with.

[prestige]

Ah thank you ladies for your replies. I have said it before, but this forum is a total godsend!

My nausea and fatigue and insomnia come in bouts and then if I take it easy, I start to feel better and nearly feel back to normal (apart from the menopausal night sweats).

If I over exert myself for any reason like an exercise class or go for vigorous walk, I start to feel unwell and the fatigued and the on-going nausea rears it's ugly head.

Thankfully, I'm not bed bound and I can pootle around the house and do light chores.

My worry is that I have been feeling poorly again since Monday night and I have not felt well enough go in to work.

I'm  lucky that I work part-time and I don't have to go in or Fridays. I'm hoping if I rest up until Sunday, I should be ok to go in on Monday.

[zen]

Hi Prestige

Really sorry you have been diagnosed with ME/CFS.  I agree with Anais.  If you have the EBV most people do get better overtime.  Rest as much as possible and be kind to yourself.

I've had ME/CFS for 24 years and the menopause has been challenging as the symptoms can overlap a bit.  I also have an underactive thyroid which has not been properly treated and I am still trying to sort out so do make sure you have your thyroid tested and ask your GP for the  results to make sure you are not borderline.  A lot of thyroid symptoms mimic ME/CFS and overlap with the menopause.

Anais.  I am so sorry you have had ME/CFS for so long.  I am 56 too!

Prestige I do hope you feel better soon.

zen x

[Taz2]

Have you been given advice on how to stop the glandular fever virus from spreading to others if it is still active?

Taz x

[Ladybt28]

oh please don't cry there is no need  Yes Epstein Barr Virus can be extremely nasty but a good few people recover and it does not always mean CF or ME.  It is one of the herpes virus family I think?  There is no real treatment for it except plenty of rest, sleep, keep hydrated and yes doctors can be extremely useless at giving advice especially in cases where there is not treatment for the condition you just have to wait for the symptoms to subside.

I have not been diagnosed as having had it but I have had fatigue, aching joints and numerous viruses  - when a child, persistent chronic tonsilitis, persistent cold sores, scarletina (a version of scarlet fever) mumps, german measles, and rheumatic fever and glandular fever  (so I could well have had Epstein Barr as well for all know, its in the herpes family) all by the age of 13!  I was on antibiotics from the age of 2 until the took out my tonsils at 12 - which is not good!

In 1998 when I was 26 my GP said he thought my ongoing problem of fatigue, aches and chronic depression was CF/ME (ME in those days was called Yuppie flu!) and said there was nothing he could do to help and there was a book I needed to read.  I have to say he was quite enlightened for his time because in 1998 they said it didnt exist and it was all in our heads.  Needless to say I have had those symptoms all my life since then but

2 years ago I was diagnosed with fibromyalgia, however, I have since found out from being on my meno journey that a lot of my problems in my life have been hormonal and hormone influenced. The list of "scary symptoms" of meno is very long and comprehensive and easily mistaken for other diagnosis such as fibro and ME or CFS.  I know I dont have fibro or CFS or ME.

Obviously you do have Epstein Barr as a blood test shows and the symptoms of that are as you describe extreme fatigue, aches, lack of appetite generally feeling horrible. I believe it can take a month for it to go and then in some it can take monthS and others just a minority suffer for a quite a long time.  However, you could well be menopausal as all those symptoms and quite a few more overlap.  Did he give you any idea how long with the Epstein Barr he though it would take for the symptoms to go an how bad have they been over the last 3 weeks or so?

[Ladybt28]

Sorry I was halfway through my post and got distracted this evening you have said how your symptoms have been prestige - sorry!

[Donna-paul]

Anyone who thinks they may have M.e please listen to your body and rest rest. I've had M.e since the birth of my son 26 years ago and it took 2 years to be diagnosed and the best advice I got from a M.e  Dr who sadly no longer with us Dr Mitchelle was pace yourself. I kept pushing and pushing myself working and a baby and sadly had to give up and never been able to work since. I believe mine was brought on by tramautic birth and hormones. Always suffered pmt pnd and now bad menopause. I lead a life as best as can be by pacing and lots of vitamins as immune system rubbish. Found out this year Vit d deficient first time been tested all my family is to mum and sister. With the good summer and Vit d I did feel better but starting to go down because of winter. Everyone should be taking Vit d and get tested!

[Ladybt28]

Oh Sparkle - it sounds like your daughter is now so much better informed than us when we were in our 20's. As I have said before all my problems seemed to have been hormone related and it is really only in hindsight and with education here that it all makes sense but years ago none of that counted for anything - the medical profession can be a bit useless regarding hormone problems now but even so it has come a long way considering where it started when I was a teenager.
I hope she will keep at her GP if she continues to have problems.  All this sounds so familiar and I really don't want to hear or see anyone struggling for the 40 years like I did!

Donna-Paul - I had period problems, CF, postnatal depression, traumatic and early births, joint problems, aches pain, left-sided eye migraine, nausea, acid reflux, depression, anxiety - all of which were written off with "no idea why" - wait for it to go away and it never did until I got menopausal and got vaguely onto a fair regime of HRT.  Most aches gone, left sided migraine well reduced, sleeping better, anxiety and panic attacks gone, nausea gone, acid reflux one, - still problems with fatigue and depression but reduced - still a bit unmanageable, but better.

You will get better overtime from the virus - don't let what you read scare you - plenty of rest as everyone says and also maybe the mindset of "not being so hard on yourself" - you are not well with a nasty virus and will take however long it takes to go away - sometimes we drive ourselves round the bend in frustration.  Seems there are more "less common" if you know what I mean, viruses going about these days - well maybe you just hear about them more? - Its just difficult when you work, have a family and feel beyond rough.  I really hope it passes soon.

 

[Ladybt28]

Thanks Sparkle - need to shift the crushing depression, libido and enthusiasm levels - which I think would be fixed by testosterone.  I am as low in mood as you can get, there has been and is not joy or enthusiasm for anything but I can go through the motions now although I feel nothing!  And no AD's because of my past are still out of the question - testosterone first and if that doesn't work then I may just consider them but I have a while to go before I can get to a "so called" expert who can prescribe T - I need to get to January - so suffering in the meantime quite badly but take the other things out of the equation and things are moving from minus 10 to 0 but I really want and need to aim for + 5 - that would be a flaming miracle in my book if I could get there!

I too am a "knowledge is power" in all things - plenty of research and reading about everything - even buying a new washing machine! but Dr Google never scares me because I know what to expect and can work out what to do about it if the worst case scenario ever reared it's head which it has done in numerous health cases in my family! It's the unknown I dread and having no plan - those who bury their head in the sand drive me beyond dolally!