So I don't have lupus...: Hey all Just received... - LUPUS UK

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So I don't have lupus...

natal1a profile image

Hey all

Just received a call from the rheumatology nurse. They repeated my blood tests last week as I had really bad foot pain. To cut the story short, my ana has come back positive again (3rd time), but nothing else is showing up for any specific diseases. I know I should be happy but the fact is my joints and muscles still cause me so much pain, my back is always killing and I'm constantly tired. So the symptoms combined with the ana still apparently amount to 'post viral syndrome' apparently.

Does anyone know anyone who has had post viral syndrome? They've given me no advice apart from to take anti inflammatories! I'm trying so hard to manage but it's really hard. I've tried staying off work, going to work, exercising, not exercising... Aaaaaargh haha!!!!

17 Replies

If you don't have Lupus, that is REALLY good news. The bad news is that post viral syndrome sounds very woolly and as if it is not "real".

My advice, for what it is worth - having had lupus for nearly 8 years now - is that you need to try to feel positive about this non-diagosis, at least for the moment. Let's pretend - just for now, that this is some kind of post viral thing - so your body needs time to recover. You need a balance of rest and the right kind of exercise. The key is: don't overdo it - go swimming, but stop before you are tired. Don't jog, but do walk, and stop before you are done in. Ibuprofen before a morning swim where you pace yourself and don't push yourself can improve your entire day. Have a rest after lunch. Cut down any alcohol. Eat lots of vegetables: a so-called mediterranean diet.

If, in the end, it all flares up again and it turns out you do have lupus, at least you will have tried your best NOT to have it. Don't give in, but do give your body a chance. I wouldn't wish this on anyone SO I REALLY hope you get better soon.

Tr4c3y profile image
Tr4c3y in reply to

Hi Maggie

Just this week after feeling unwell for a month I felt better on Monday so cut the grass washed the car and Put two cupboards together, went to bed feeling good thought I had passed Wrong - spent the rest of this week feeling soooo bad - think I should have heeded your words earlier. Hardest thing I am learning is to pace myself and accept what i can and shouldnt do! Hope others have read this too :)

in reply to Tr4c3y

AHHH.....!! Tr4c3y, I give out the advice but I am so bad at following it myself. But it is so hard to NOT do things when you feel well enough to do them. Your day sounds exactly like the sort of day I'd have if I felt well - and your rest of week sounds the same too.

The only positive is this: if you didn't do that stuff on the good days - it would still be there, nagging at you, and frustrating you. At least you did it and now it is done (well grass grows and cars get dirty, but you always have to clean and cut!)!

I'll pace myself when I am dead, I guess. But I DO try. REALLY I do. AND it is good advice to not do too much!

fastermatt profile image
fastermatt in reply to Tr4c3y

That’s where I’m at too. I feeel good and when I do I want to get a bunch of stuff done. When I overdo it, it kicks my butt for days

Thank you for the advice. But the problem is, I have already done everything in terms of 'pacing it' and 6 months down the line I'm no better. I eat pretty healthily anyway, exercise, I've been doing gentle exercise to help, am on anti inflammatories, but I still feel pain. And I'm on reduced hours at work since may. But even doing all of this sometimes my body just doesn't want to play :( stairs and even slight hills are a nightmare, I cant hold my arms above my head in the shower etc etc and it has not improved. I force myself to try and work because I believe it's important but sometimes my body just caves in. I wake up exhausted.

So I believe I'm already pacing it but not getting anywhere... Aaaaargh!

nanny4 profile image
nanny4 in reply to natal1a

Hi there,I can really understand your frustration,it took about 6 years if not more for my daughter who is 27 to finally get a dx of severe systemic lupus,she had swelling on the brain and spinal cord,severe full body sores,damage/scarring on her heart valves,scarring on her kidneys,and so much more.

To cut a long story short she got a dxs 9 months ago,only now it has all changed,they say they are now treating her as if she has lupus,but even the lupus people in London hospitals say she doesn't have lupus.

She is due to see yet another consultant on Thursday,and on the same day she is due to see a neuro as they have found something wrong on her brain scan.

I should add,she hasn't got any of the lupus antibodies etc in her blood.

At least all the meds she is on help many auto immune diseases,her fatigue and skin etc are at least so much better shame about her brain scan.

All I can say is if you have tried everything and you are not happy ,ask for a secound opinion,this is what my daughter did.

Sandy.

mstr profile image
mstr in reply to natal1a

Hi natal1a, It is so frustrating I know when we don't have the answers we want straight away. Does the rheumy plan to see you as a 'follow' up patient in about 3 - 6 months? If you have had ana positive on 3 occasions and your symptoms then I thought that this would occur, so it might be worth checking whether you will receive a follow up. I up just starting to get somewhere now after about 15 months since I first saw the rheumy. I hope you do receive a follow up appointment. Hang on in there.

Hi I also mean't to say my daughter was diagnosed with post viral fatigue/chronic fatigue syndrome at the age. of 11,personally I never believed this as she had been unwell since a baby.Sandy.

i agree pray its not lupus. its a nasty disease and there is no cure and the doctors just experiment on you and keep thier fingers crossed that whatever they have given you works. some of the posters on here are taking hundreds of pills a week.

you also dont gey much help from society as a whole as people think you are faking ....pray hard x

I was diagnosed with ME back in the late 80's after the media had made a big deal of it. This term was pretty much interchangable with Post -Viral syndrome.

It is also very similar to organo-phosphate poisoning

I had had Glandulaur fever and a bunch of other childhood illnessess -chichen pox german measles etc.

In practical terms this situation is the same a lupus in all but name. And I suspect that like me, a lot of people who took the tag ME are now being diagnosed with Lupus.

Well I've decided to just try and manage as best I can. You are all right, I definitely don't want lupus. But it looks as if I haven't got it as although I've had three positive ana tests, nothing else is showing up. Still hard to manage day to day but hopefully it'll clear up soon. I'm due to see the consultant again in a couple of months.

Am thinking of trying cognitive behavioural therapy as I've heard it can help in these situations and with pain management?

Out of interest does anyone know anyone who has recovered from post viral syndrome? It seems that most people were diagnosed with it and it then turned out to be more? Rather than people getting better from it?!

In fact I did have an acquaintence who fell ill around the same time as me. We were both diagnosed by separate consultants with ME (which our then mutual GP immediately told us didn't exist). I moved home and we lost touch. 9 years later I finally received a correct diagnosis of SLE and bumped into her just afterwards. She made a gradual recovery and had been fit and healthy for some years. So there is hope! I can't comment on the relevance of your positive ana tests since neither she nor I had any. However, if your symptoms don't improve after a suitable period of takings it easier than you would normally, don't allow things to slide! My GP spent so many years telling me my symptoms were imagined and treating me as a neurotic hypochondriac that I, my family and friends eventually believed him. It was perhaps the darkest period of my life. I clearly recall the day he called me into surgery to inform me tests results showed I had SLE - he couldn't even look me in the eye, lol.

I am seronegative Sjogrens Syndrome which is similar to Lupus. I hear there are many people who are seronegative with Lupus also. Post Viral syndrome sounds pretty bogus to me. Never heard of it. Of course I live in the US and perhaps it hasn't come here yet...

in reply to 777dove

Yes, Sjögren’s Syndrome, named after a Swedish eye doctor has been described as a cousin to lupus whereby autoantibodies attack the saliva and tear producing glands. Hence dry mouth and eyes😱.

See Chpt 13 from a book by Prof Hughes pub by THE LONDON LUPUS CENTRE, A PATIENT’S

Guide to lupus>>>

thelondonlupuscentre.com

The British Sjögren’s Syndrome Association:

bssa.uk.net

Hi natal1a,

I’m confused. “Post viral syndrome”? They say.

What virus? Have they identified it ? Epstein Barr virus? >>>glandular fever>>>risk factor for lupus.

And yet ANA tests are positive?

Do these people know what they are talking about?

Advice: you need a specialist consultant doctor in lupus.

You seem to have lupus classic symptoms: chronic tiredness, aching joints and muscles etc...

Regards.

I’ve heard over and over again about how long an SLE diagnoses takes. I’ve also heard to not give up and keep being proactive about your health. We know our bodies better than anyone. We know when something isn’t right. So people here may tell you you don’t want Lupus...well you also don’t want to feel sick and to be told you are not. Keep being proactive.

in reply to Glitter8

Love your post , yes we don’t want to be told anything is wrong in diagnosis but the being sick without diagnosis is worse than the feeling sick, the mental strain of it is probably why they offer antidepressants not as treatment to physical pain. I don’t want lupus or anything like, but I do want to know why I feel so bad. The medical world is so knowledgable nowadays , the surgeries they can do amazing, you’d think they’d be able to help find answers quicker by now . You are right , being sick without answers is very hard when you’re told all ok. Mind crushing but thanks for saying it 👍

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