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.

oh dear no one at all. Oh well.

Sounds absolutely awful. I know this is a very long shot but have you tried keeping a food diary to see if the good periods coincide with when you don't eat certain foods (or the bad periods coincide with when you do obviously). You'll think I'm crazy (and it's not something I mention to the medical profession!) but while I do have several food allergies (i.e. I get swelling, rash, etc.) I also have intolerances. If, for example, I eat corn I will get joint pain and swelling - before I realized this I ended up one Christmas with the joints in my feet swollen to such an extent that I could not flex them to walk properly and they were also incredibly painful. It's not the underlying cause of your problems but if you have intolerances it could be contributing to how bad you feel and certainly the inflammation intolerances cause would not be helping.

Hope you can find something that helps you towards a full recovery soon.

waves Sounds absolutely crappy. I don't really know what to say.. you have a rough ride. I'm sorry you feel so bad. How to get through the difficult weeks? Can you treat yourself every day or couple of days with somtheing nice? Find something non-tiring to do with your friends?
I've had a burn out and have never got my strength back. Have days off, need to sleep, lie in bed with a book, soak in the tub and let the world just pass me by.
It's horrid sometimes and I struggle at times letting go of wishing to be better. I'm not, by now probably never will be again and that's crap. It is grieving for who you was, having to let go of how you wish you could be.
I have nothing helpful really, I'm sorry.. but didn't want to read and keep stumm. Good luck, I hope you will feel better, if only with yourself.

Thanks so much for replying flaming. It was really interesting to read about your joints and the corn connection....how absolutely horrible. It is the weirdest thing to have something that can be so debilitating but not to actually know what it is! Not to be able to give it a name and so have some sense of what might help/make it worse. Well to be fair I do know that pushing myself physically makes me very ill at the moment (much to my frustration) and catching any other virus.

I don't think you're crazy at all. I have tried all sorts of things including looking at my diet, no obvious triggers except avoiding caffeine and alcohol that triggers my palpitations. I am trying to include anti inflammatory foods in my diet as much as I can (have a juicer and make green juices with ginger in each day) I certainly try to eat very healthily and figure that can only help.

When I feel well I feel ok and cheery, like I used to, but when it comes back, especially the loss of speech and fatigue I get so down. I am going back to have some more accupuncture because that lifted me last year when I was so ill with it. Thanks for replying, I really appreciate it.

oneholycow, that made me have a little cry in a sort of good way. You described it so well. I know this sounds absolutely ridiculous but I am not good at being ill!!! I'm sure no one enjoys it but this is sort of the opposite of my personality which is highly physical, energetic, outgoing and extremely chatty. Not to be able to talk, do sports or anything much is so upsetting to me. I'm so sorry to hear about your health problem. You are right that relaxing is helpful. I started meditation last year and that has been hugely helpful in calming me down and stopping me getting so down on myself. I hate it though.....I just want to be properly well. Thanks so much though xxx

You are welcome... Glad to hear you took up meditation, that has helped me a lot as well.
But the tricky thing is that you probably make yourself more tired by hating to be ill... I know how hard it is and I still resist as well. But it is not giving up if you stop fighting. Bamboe bends and does not break. If you bend in stead of push back, you might find that there is a bit more space for you.
I don't want to preach and stuff. It all sounds too easy to say: you have to let go, live in the moment yadayadayada. Yeah, right. If you can't even go to the bloody shops that's all well and good but mostly bullshit. Nevertheless. Don't hate yourself. You are battling some monster virus and your body gets tired. It is doing a lot of work, be gentle on yourself. Take care.

Such wise words. Thank you very much, you've really helped me, I actually feel like printing out your post. I really like the bamboo analogy. My accupuncturist (who is amazing) tells me that in Chinese medicine illness is an invitation from the tao. She has her tongue firmly in her cheek when she says this but she is right in that I have learned alot about myself in these past 2 years and have gained so much more empathy for others that are ill, now that I understand more about the subtle things that are so hard about it rather than the obvious things.

Thank you Supercosy, that is very sweet and warms my heart!

Have you tried Chinese medicine, OP? I haven't, but would be interested to know how others have hot on. I have multiple illnesses including the crushing fatigue you refer to. It all started with a pulmonary embolism last year, very weird.

Got, not hot! Sorry.

Can you remember why ME (or CFS, chronic fatigue syndrome as it's now known) was ruled out? Diagnostic criteria vary unfortunately (there's two or three different sets) so it may depend on which criteria your doctor was using. I was diagnosed with it in 2012 but if the specialist I saw had been using a different set I would not have been accepted by the clinic. Other doctors may have diagnosed me with fibromyalgia instead for example.

Have you looked into POTS - postural orthostatic tachycardia syndrome. I have this too (was diagnosed at the same time), put very simply it means that when I'm upright my blood pressure drops very low and my heart rate speeds up, this makes me dizzy and wobbly as well as increasing fatigue.

Much love to you - illnesses like these are a total nightmare

I haven't but I would be interested Linerunner because I was a little sceptic about accupuncture but it has really helped me so much. Not only because the way my accupuncturist looks at my health condition is so different to the way my consultant at the hospital does. So many things that I've described to her, that have been dismissed as "odd" at the hospital, are things that she says are expected for example, when my heart is playing up she says that it is normal for my stomach to be really upset. That's just one example. I might look into it though.

Some of your symptoms fit with a fibromyalgia diagnosis, Fibro is often considered the other end of the spectrum to CFS. I get an all over ache as well as specific concentrated pain plus overwhelming fatigue, I know of others who have problems with balance, speech etc - everyone seems to have different symptoms. Just wonder if it's worth seeing a rhuematolgist or getting a second opinion if you've already seen one?

I've never heard of the pots thing frugal, thank you for telling me about 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. Actually I always have joint pain and often vertigo but it's true that I do sometimes have great energy levels and then every 2 or 3 weeks I go back down again. Thank you so much for your message.

Hi daisy, yes my consultant is a rheumatologist. He is lovely but he says he "has no idea" what is wrong with me! Every time I have a flare up they run the bloods again and the odd thing is raised or depleted but never anything to sort of nail it. I have kind of tried to stop focussing too much on the diagnosis because my gp is convinced it's a virus that WILL eventually get kicked out by my immune system. It's more the living with it that I find so bloody difficult, whatever it's name is, I don't want it!!!!

Linerunner, please don't if it's too intrusive of me but could you say a bit more about your illnesses? It is SUCH a comfort to me to hear that there are other people who have strange undiagnosed illnesses.

Sounds exactly like me to me

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.

It does seem to typically strike very energetic busy people

I may be totally off the mark, but a friend who suffered for a long time with CFS was helped immeasurably by the lightning process.
It seems a lot to do with managing how much you can do and your attitude to illness int he first place - might it be worth investigation? obvs if its not CFS then maybe it wont help at all but it could be worth a try in terms of how you feel about your symptoms.
I hope it resolves soon, sounds dreadful.

Thank you all. I'm worried about IT being M.E. because I am very fearful of that. I just fear that if it's that I'll never get better which I can't cope with at the moment. Sorry, no offence, it's not like not wanting M.E. is going to make any difference to me having it or not and you seem to be doing well with it. Thank you all so much, I have felt so alone with this.

ME might not have a specific treatment like medication but it is not unbeatable. A lot of it is learning to pace yourself and as I said stabilising your routine so you don't 'boom and bust'. I've spoken to a lot of people who've beaten it, so don't feel it's forever if that is what you end up diagnosed with.

I totally agree with what you said about having learned from it BTW and it's something I share with people who've told me of their recovery. In some ways I'm happier and more fulfilled than I ever was before getting sick.

And no offence taken BTW :)

Thanks frugal, I do feel like that in my good patches. I just seem to go right down again when I feel ill though. I know it's stupid but I actually feel embarrassed about being ill, especially when it goes on and on like this.

No, OP, I don't mind saying at all, I'm just wary of boring the tits off everyone on Mumsnet yet again!

In brief, I was a fit 51 year old, very active, and was unexpectedly felled by a near-fatal pulmonary embolism last summer. I then had to take warfarin, still on it. Then the debilitating fatigue set in. Then a severe gynae problem was found - still being investigated as either a fibroid or endometrial cancer, and the bleeding is horrific. I also have a range of ailments which seem to have an auto-immune element, such as a major flare up of psoriasis, and most recently a horrible corneal ulcer which saw me zonked on tramadol for four days.

All a bit crap, really.