Struggling to cope with virus that's lasted over 2 years.

[Supercosy]

Please can I just share this....I am so bloody fed up. Around 2.5 years ago I was an extremely active person, regular long distance runner, busy social life etc.

In December of 2012 years ago I became unwell. It started with joint pain and swelling, followed by weeks of horrendous palpitations (sometimes for hours on end) total exhaustion. Then periods of feeling fine, then it would start again. Then last year I began to have vertigo, problems with balance and controlling my right leg. Then my I developed a stutter and then my speech went completely for several days. There have been other intermittent sypmtoms that I wont bore you with but anyway, it's been a tough couple of years. I have been in hospital many times, have had many possible diagnosis muted, all of which have proved to be wrong such as MS, HIV, ME, brain tumour, stroke, Lupus. Don't get me wrong, I'm hugely thankful that I don't have those things but living without a proper diagnosis was incredibly scarey and difficult too.

Anyway, 2 years on I have a fantastic Dr and consultant and they tell me that I have some "strange virus, as yet unamed" that has a "meningil" quality, hence my speech and co ordination problems that come and go and obviously some inflamation which is causing my joint problems, that is pretty much all they can tell me.

I am having some really good weeks where I feel normal and energetic but I only have to have a bit of a busy few days or to catch a cold and the symptoms come back. My Dr says this is normal when you've had a horrible virus and is a bit like when people have glandular fever. I know she's right but I am so sick of it. I hate having to constantly "pace" myself, I hate the embarrassment of not being able to speak (I sound as if I''ve had a stroke for several days at a time) and I loathe the crushing fatigue. Most of all though I hate the fact that I have to take time off work (I love my job), let friends down when we've planned things and have had to give up running altogether.

I know I am so much luckier than many people but I just feel as if I don't know how to get through the difficult weeks anymore.

LineRunner, I'm so sorry, how bloody horrible! I also feel like the MOST boring person in the world to my friends and family even though they insist they don't mind! Last year in addition to the problems I told you about I had 2 awful dental abscesses which were not found until they had caused me to have additional problems with my heart and breathing. I mean TWICE in one year??!! Not nearly as serious as you but it's like going from being a really super healthy sporty person to someone who is "always ill". I bloody hate it. I really hope you get some good news about your gynea problems. My DP had symptoms like that 2 years ago and thankfully the problem was her fibroids so she had them treated in a small op. My brother had corneal ulcers last year (he, my dad and myself were all in hospital at the same time!!!!)

Hope it's not mean to feel glad that I'm not the only one feeling like this. Not that I wish it on anyone! I just kept thinking "these things HAVE to be related". Which just illicited a shrug from my consultant.

Oh, I'll be ok. I just have to be. People depend on me, IYSWIM.

It does start to feel that you are defined by your illnesses if you aren't careful, especially if signed off work a while. I try to make sure I am still defined by my brain, my sense of humour, and by my role as mum, and I do have fun times with my OH.

I am trying to eat foods that are good for my immune system - berries, oily fish and all that malarkey.

I reckon Chinese medicine would be good because it doesn't compartmentalize conditions like the NHS does.

Yes, that's what I was trying to get at before. It's a very different way of looking at things. I am interested in it. Will let you know! I agree with everything you've said. I hate it when I am ill because it's like I lose the "me ness " of me ifyswim. Nevermind, I do also have good times.

Hi supercosy

I had an undiagnosed illness for 4 and a half years. Started with vertigo, misdiagnosed as labyrinthitis. Constantly tired, frequently nauseous, always dizzy, ear symptoms. MRI negative for tumour and was unlucky in my consultant, who blithely told me his speciality and interest was the thyroid and left me to get on with it.

I eventually discovered a consultant who I thought could help me, and he has turned my life around. I still have to pace myself and have the odd wobble (literally) but the black days I had so many of in the past are mostly gone. What an earlier poster said about grieving for the life you have lost really resonates with me. That's exactly how I felt

The uncertainty regarding what is wrong is horrible, as is the lack of certainty about the future. I too was a very very active busy person, a lone parent used to managing everything before I got ill. I felt very angry at times that I couldn't do so many things I used to, and frustrated that a 20 minute walk would leave me exhausted for 2 days. It sucked much of the joy out of life.

Feel free to ignore the following suggestion but I think it's worth mentioning. The consultant I saw is called Dr Surenthiran, he specialises in balance disorders, and might well be able to help with your vertigo/balance problems. He is extremely highly regarded worldwide, and as I mentioned, has helped me enormously. I saw him privately as I couldn't manage the journey to see him at Medway on the NHS. He runs clinics in London and the SE.

Do pm me if you want to, and apologies for rambling

Just to add, what kept me sane was reading, I read some brilliant books in those years, and also discovered Radio 4. Both of these took my mind away from the misery of being chronically ill...

"extremely active person, regular long distance runner, busy social life etc"

Were you overdoing it OP before this illness hit? Either physically or mentally? Be honest!

If so, can I suggest that you start reading up about adrenal fatigue?

Also, it would be worth asking your GP for copies of all your blood test results for the last two years, with the reference ranges, and then putting them on a spreadsheet so you can see if there are any patterns.

It sounds as if you are on a rollercoaster and the collective wisdom of Mumsnet needs to find a way to get you off it.

Thank you so much Aimee, that is really interesting. I hadn't really thought much about the balance thing in isolation as I have so many other weird things going on but it is a very obvious thing when I have a flare up. My balance and the co ordination of my right leg go completely. I will look into that, thank you so much. I agree about radio 4, what a godsend that is!

RockinD, possibly I was a bit manic but I loved it! I am really a bouncey person and I was so excited about my running. I love my job but was in the middle of caring for my very difficult MIL with dementia and that was grim at the time. It's alot better now. Maybe I was over doing it, so hard to say since plenty of other people lead busy lives and seem to be fine. It's a possibility though, thank you for telling me about the adrenal fatigue, I'll check it out. Your last sentence is unbelievably lovely, thank you!!!!

Just a thought, someone mentioned this on a thread the other day, have you been tested for Hughes syndrome? Similar auto immune condition to the others you mentioned.

www.nhs.uk/Conditions/Hughes-syndrome/Pages/Introduction.aspx

I'm another one who had terrible vertigo and balance problems along with fatigue, pain and generally feeling very ill. Noone ever got to the bottom of what was wrong. The consensus was that I'd had a virus that had damaged my ear. It was horrible. I had 2 years when it was really bad and then it would be fine for a few weeks or days and then bad again. It didn't help that noone really believed I was ill because my diagnosis was so vague. People kept saying go back to the doctor they have to do something- that made me feel somehow it was my fault. I got frustrated and pissed off. My life and career basically stalled.

In the end I had to change my mindset. There was no magic pill that would set me back to normal. I had to stop beating myself up everytime I had a relapse and just accept it. Not getting pissed off everytime it happened was def the turning point. I knew it would be good again. Eventually I just sort of did my own CBT and forced my brain to ignore the dizziness and the weird sympotoms and to carry on. My symptoms were filling my brain really.
It took a good few years but I am mostly back to normal albeit with shit balance and I still get bad periods.

I have the utmost sympathy for you- you will get better just not overnight.

I will look at that Ruby, never actually heard of that one!

tobias, that is so interesting. Oddly my dad had a similar experience with his inner ear after a terrible chest infection. He kept falling over, for ages was told there was nothing wrong with him and that he must be depressed (by this time he pretty much was!!) and then, a year or so later found out the virus he had had destroyed something in his inner ear. He is fine now.

I totally get what you mean about when no one knows what it is you sort of feel like it's your own fault. You are almost made to feel like that. Drs have said so many stupid things to me like "why do you need a diagnosis?" No one would EVER say that who was actually ill!!

Having said that, this time last year I was so much worse. I have been steadily improving.....I think that's why this latest bad bout has made me so upset. I keep thinking I have left it all behind and then it comes back again. Once I changed GPs things improved for me alot plus my accunpuncturist is amazing but I can't afford to see her all the time. I have come a long way in not getting in too much of a state but I still do find it horrendous and then I get this awful dread that I may never shake it off and it's such a horrible feeling.

Thank you all so much though xxx

Actually to be honest since talking to my accupuncturist alot last year and my Dr who both think this IS in fact the effects of a horrible monster virus I don't feel as upset about not having a diagnosis. I just feel upset about the day to day coping with it.

*The consultant and my gp said they don't think it's M.E because I have very good, up periods in which I have my energy and my symptoms vanish.

(that's to them, not you!)

ME/CFS is known for the tendency to have a boom and bust cycle. You start feeling better, so you do more, and because the post-exertional fatigue doesn't kick in straight away, you end up doing too much, and then your symptoms flare up. So you rest, you start feeling better... and so it begins again.

Most of my therapy (at a specialist clinic) has been specifically aimed at helping to stabilise this and I'm finally getting there.*

Fibro is the same. I first had Fibro (but wasn't diagnosed, was told I had reactive/viral arthritis) in 1991, it lasted till approx 1997, consisted mostly of painful joints but no swelling and moved around. It then vanished. I then had a flare up in 2008, just in my hands and it lasted about 3 weeks, it then disappeared and I had nothing till a year later. Again, just my hands were affected and it disappeared after about 3-4 weeks. Six months later it came back and from that point it would come and go and within another six months, I've had it virtually continuously since but have spells where I'm pretty much ok, spells where I'm so exhausted and spells where I'm in so much pain etc.. Other people I speak to are continuously in pain, others have spells like I do and so on... From what I've understood from chatting to people who have a CFS diagnosis, they have similar symptoms and ups & downs. I know some people who suffer with fog and struggle to speak, I don't get like that but I do get very forgetful and muddle my words up.

I think if I was you, I'd ask for a second opinion. It wouldn't hurt would it?

Thanks so much for responding daisy, I will look into it again. You're right that my symptoms are very similar. I wonder about the lack of co ordination which only ever affects my right leg and my chest discomfort whenever I have a flare up. There are so many weird symptoms it's a rare day when I actually feel completely well but as long as I don't have the fatigue I can cope. The head fog and the speech is really strange, usually begins with a stutter and then it becomes impossible to speak at all, I can think it but can't say it. One of the consultants told me it's called "expressive aphasia". If it's a really severe episode I sometimes can't remember how to make my body do simple things like go upstairs or hold a cup.....then it vanishes in a day or so. These are the reasons why my consultant said there is a meningil quality to the virus and he then gave me a very long word to describe it in more detail which I've forgotten.

I'm getting alot of great advice here today and I cannot thank people enough, sharing your stories with me has given me huge comfort. x

This is so hard for you.

Have you also ruled out Lyme disease ? Were you in any area with ticks? It's really on the increase in the uk despite little known about it here and DD had it. It's horrible to have as can wreck all sorts of havoc to your body so I just wondered and not everyone finds a tick or gets the bullseye rash it often comes with. It's also often behind other 'diseases' apparently as easily missed

Hi Lovepancakes, thanks so much for answering (so do I by the way, got a special pancake/crepe making kit for christmas!)

I am VERY interested in Lyme disease. Although I don't recall ever getting a bite I used to run in the woods nearly every day before I got ill. My consultant has asked me about bites several times and I've always told him this. Oddly enough a friend of mine has had the chronic sort of this disease for some 4 years and is just feeling a bit better now. Is it hard to test for? I've never had anything conclusive come up in my bloods, nothing that fits a known viral pattern ifyswim.

Sorry to hear about your DD by the way, is she recovered now?

come on this thread x

Thank you Giraffe, much appreciated x

Thanks Giraffe I will do x

Supercosy it needs a specific test as far as I know but it is also possible to get a false negative result (DD's was positive). Have you ever for example had an itchy bump on your scalp as this is what happened with dd and why we never saw the tick although I knew we'd been exposed to them. She's fully better thank you and having been hardly able to walk she improved as soon as started high dose antibiotics.
I should think it's unlikely as you would probably have noticed a tick bite but just in case, I just wish you could find out exactly what's going on and how to get better.wishing you so well.

Marking place on this as my colleague (not a mumsnetter) has had very similar symptoms to this. Will be back later!

Hi Supercosy. I have a similar history but am further along the road to being more well than you by 3 years. I have been dxed with CFS (with POTS), but am much more able now than I was in the first 2-3 years. Like you I wanted to get better and feared ME. MS, SLE, various viruses and lots of others (things that can be tested for) were ruled out despite some signs of inflammation, autoimmune, and autonomic malfunction.
I was also a fit active person, although I would not say excessively so. It all started one virus type illness after another, but because I have a disabled child I could not rest. Then I got a severe type of autoimmune pneumonia, a long stay on O2 in HDU and I came out barely able to stand, or walk. Then my joints swelled up.
Any way now I am functioning much better. I still have to pace, but it is part of my life. I too got help from my local CFS clinic to pace properly. Actually I thought I was already good at this but well I was not! Drunk legs and slurred speech are warning signs I had over done it. I was regularly keeling over and could not get out of the cycles until I had help to see I was overdoing it, even though the bit I was doing was almost nothing. Gradually as I evened out my activity levels ( and working out what tiny things like opening your eyes or sitting up needed energy) I could do more and not get worse again. Now I think I am functioning around the 50% level which is massively better than it was.
The hardest time was those early 2 years when I expected to get better - or at least an explanation-and like you I kept going up and down. Although I was never almost normal as you are sometimes.
Anyway just so that you don't feel so alone. There are others out there too.
I think accepting I was ill was the first step. I read about mitochondrial damage from severe illness (one of the many CFS theories) and as it made sense have worked on what is known about the slow process of restoring mitochondrial health. The theory may not be right but it helped me see the big picture and think in terms of getting more well rather than back to my old normal.

Thank you pancakes, I never did notice a bite but it would be feasible and my symptoms are very like those I've heard. I know this sounds strange but having spent 18 months searching for answers I am actually fairly comfortable with my Drs and consultant's veiw that this is some kind of nasty virus and that it will come and go (especially if I'm ill or tired) for a while. It's just the living with it!

magso, thank you so much for telling me your story, you poor thing, what an ordeal. It IS actually very hard to really, really rest if you have a life isn't it?! My Dr says to me "go home, go to bed for 3 or 4 days" which is probably what I need sometimes but I have a Dd (DP works away from home all week) and I have a mil who needs caring for (much better now than she was, don't need to go every day). Oh, you know what I mean! I don't actually feel as if I particularly need a name for this because I agree that it does feel viral and does behave in exactly the same way they said it would. I really hope you continue to improve xx

I had a little success today though. I cancelled some social stuff that I was meant to be doing this weekend and I bumped into a friend with a group of friends while going to the postbox. My speech is really awful today and I managed to cope...none of them screamed in horror and ran away, they were actually very concerned and patient. I am getting over my embarrassment bit by bit. Dp called and told me to stop stressing over getting stuff done in the house and to just rest as I've been told to. Thanks all, will keep you posted.

Glad you came on other thread too. I want to post a longer reply but as am sure you will understand am shattered - relly over done it today and need sleep. But will be back maybe tomorrow or Sat to post properly. take care.

Thanks Giraffe, I will look forward to chatting again. Sleep well all x