Does any of this sound familiar or have I just got a virus? I feel so ill.

[melodypond]

Hi all

As you will see from previous posts I am undiagnosed but on a mission to find out what is going on with me. For the last two weeks I have felt great. I have been to the gym three times, went to the park with my little girl at the weekend (it was lovely but I felt so guilty afterwards - she said it was 'the best day EVER'. I only took her to the park but haven't done it for about a year. to her she must have thought mummy was back.). Anyway normally after doing those things I pay the price, but no I felt fine. No weariness or anything. Then on Tuesday morning I woke up with absolutely enormous glands in every part of my neck and at the back of my head, a raging temp along with an almighty migraine, along with joint pain. I couldn't stand without feeling dizzy or heaving with nausea. There were no warning signs. I felt like my body was being attacked from the inside and just slept constantly. I was too ill to go to the doctors. Yesterday, after all the rest, I felt a tiny bit better and miraculously got an appointment with the doctor. I said it could be viral blah blah but wanted to get checked as it felt 'different' to a viral infection. She agreed. Today I went back and had my bloods taken (she agreed to do an ANA as I have had two positives). The trip to the doctors wiped me out and I now have ulcers at the back of my throat (it's not like the white stuff I get with tonsillitis, they are actual ulcers) and my temp shot up again. The 'rosacea' rash on my face has really come out and there was a redness to my chest. I feel awful. Just want to sleep. Just a virus or a fibro flare or something more?. I am diagnosed with Fibro but usually I 'just' have fatigue and pain and on occasion a migraine. Don't get me wrong, my life is compromised with fibro but this was definitely different.

[bam1993]

To me this sounds just so LUPUS!!!! Especially the mouth ulcers-one GP even told me to 'scrap my tongue, and brush it!! '- at the time I could not even eat-luckily for me another GP at the surgery had taken bloods-and this time they were showing all sorts of things, so he sent me to another Rhuemy-who diagnosed me straight away....only 7 years after I was told it was Fibro!! Needless to say I do not see the previous GP anymore-he even once accused me of 'taking a shine to him' (in front of my boyfriend,if you don't mind!!) when I pointed out how often I was having to go to the surgery, and that before I would hardly ever go!!

I was generally 'tired all of the time-no energy-and could sleep for England (am afraid to say that still happens sometimes!! But I used to go into a major 'flare' if I had any sort of virus/infection and need a double dose of antibiotic and loads of pain meds... Do NOT be fobbed off....I was for years...was told it was Fibro...even by Guys, but finally got a diagnosis in Feb 2013. Went from working 48hr week-12 hour shifts-to just 3 days a week, and nearly lost my job because I did not have a 'real' diagnosis-Fibro is still viewed with caution, even OH questioned it- now I have a firm diagnosis my job are much more understanding!! Insist on seeing a Rheumy and further investigation-keep a diary etc. take pics on your mobile. It is still a battle, even with diagnosis, but at least you are aware of what you are dealing with!! It is good that you have had your bloods done whilst flaring-perhaps this time they might show something-but still sometimes they can be elusive!! Good Luck and fingers crossed for you that you get some answers! x

[bam1993]

Hi again...have just had a quick look through your other posts...did not realise that you to had been told it was just Fibro too-what Rhuemy was it? Was he at Guys?? I am still angry if I am honest-they are supposed to be the top London hospital for Lupus-but they still missed mine!!??!! And I am sure because of it, it was the reason that my previous GP was so dismissive - My new Rheumy thinks that too many people are being diagnosed with Fibro when it is in fact something else!! (I did manage to privately message the Guys consultant concerned and let him know how I felt about it!!) You also mention your liver-I have liver problems too-and have had to come off of Metho because of it.....seen a Liver consultant this week and he thinks it is related to the Lupus. Once again Good Luck x

[melodypond in reply to bam1993]

Hi there

Thanks for your replies. From your posts sounds like you have been through the ringer too! Yes, I was told in October 2012 that I have fibro. It was by a Lupus specialist (not at Guys) who was lovely and has left the door open for me to see him again if I need to. All my bloods for Lupus came back negative (except for high liver) so I suppose on that basis there wasn't much else he could do. However, my gut instinct is that he perhaps thought there was more to it. He referred me to physio and he referred me to the heptologist so didn't just leave me with nothing. I would definitely go back to him if my bloods showed up signs of lupus or if I had a very very high positive ANA. It could be that it is indeed my liver that has the autoimmune problem - the liver controls so many functions in the body it could perhaps make you feel as bad as having lupus. I must upload photos of my 'rosacea' though and my swollen, red hands to see what people here think of those.

Can't believe your doctor intimated that you fancied him - lord if any of mine said that I would be mortally offended, I am way to good for any of them hahahaha

I am the same as you if I get a cold or virus my pain levels go off the scale and, whereas someone might have the sniffles for a couple of days, it takes me at least two weeks to recover. I do feel a little better today, glands down a bit but not completely and throat not as sore and I have eaten. I still want to sleep all the time though despite 11 hours last night.

What gave you a definitive diagnosis in the end, do you mind me asking you? MP x

[Kedaco]

Hi there all your symptoms are similar to mine when in flare-up I to have Fibromyalgia but was told by two doctors and a specialist that they thought I had Behcet's, but then I went to a specialist in London who said I don't have Lupus or Bechet's. So can Fibromyalgia do this to you? I have been like this for 5 years mine has got worse this last 11 months with a flare-up every month. Pain killers do little to help me and had to stop taking Tramadol because of side affects was worse that the amount of pain relief. I can cope most of the time with Fibromyalgia but not with this other thing my flare-up last between 5-7 days had a really bad one that lasted 10 days and I didn't sleep for 3 days. Do you get problems with your stomach?

[melodypond in reply to Kedaco]

Hi Kedaco

Why were you told you had Behcet's but then you didn't have it?? There must have been a reason two doctors and a specialist thought it was that. And why then did you seek a third opinion, were you not getting the right treatment? Sorry to sound nosey. I am just interested in other people's journeys to diagnosis - or not - as the case may be.

i don't normally have the throat ulcers though lots of other stuff going on. Yes, I have problems with stomach but more digestion really. Sometimes I don't have any appetite and when I do eat I will instantly start burping and then throw the food back up. But I have put these digestion problems down to the liver which I know is inflamed at times as my bloods show that up. Heptologist looking at autoimmune hepatitis.

I do think I have fibro but there is an underlying cause and I have learnt to recognise and differentiate my fibro pain from other pain and systems. So I have lots of nerve pain, shoulder and neck aches really badly, fatigue and migraines with the fibro. Oh and bad fibro fog! The joint pain, rash over face, red bumps on head, breathlessness, feeling of chest infection/pleurisy, hair loss on legs, burning pain on shins amongst other things, I think is down to something else, possibly autoimmune. Let's see what the blood tests show up this week - you watch, probably nothing! MP x

[Kedaco]

I was first diagnosed with Fibromyalgia because of the presser points pain, muscle and joint pain, shoulders and neck pain, head aches, ringing in my ears, find it hard to sleep even when really tired, fatigue and depressed.

I keep getting sores in different parts of my body, mouth ulcers painful and stinging eyes, my body heats up I sweat, burning and stinging all over my body fell like I have an infection and the pain becomes a lot worse, the pains in my stomach get worse and the fatigue gets a lot worse. that is why I was told by a Rumatoligist and two Doctors that they thought I had Behcet's. Then I was sent to London to see a Specialist who has seen patients with Lupus and Behcet's, after an examination and blood test was told I don't have an immune disorder. please let me know how you get on hope you can resolve this.