What a month!!

[CarolMcl]

Feeling extremely weak and low. Got a call about a month ago that i was to go in for a minor op, on the day of it I had a temp of 38.2 but they decided to go ahead with it. Anyway got pneumonia and after IV got oral antibiotics for 12 days. Fast forward 4 days and I had a terrible bout of vomiting (the 2nd in a fortnight) then woke that night with a terrible pain in my neck which moved onto my shoulder, left arm and chest. Was bluelighted to the hospital with suspected heart attack but after receiving an angiogram, ECG, CT scan, xrays and 2 echo scans I was told that it was pericarditis. I asked if it was related to my lupus and was told by the first hospital that they would look into this, then transferred to another who decided just to write to the rheumatologist, why, he's in the same building??? So still none the wiser, still in pain and still feel bloody awful. Supposed to be going abroad next week but don't know what to do, one doc says no one says yes.

Sorry for the moan, just feel so useless

[AgedCrone]

Run it past your travel insurance company before you leave UK. As you are technically still waiting treatment/diagnosis you would risk being uninsured if you went abroad...double whammy being one doctor has advised against travel.From personal experience there is nothing worse than being in a foreign hospital,when all you want is to be amongst your own medical team

Hope you get sorted soon& are feeling well enough to travel.

[CarolMcl in reply to AgedCrone]

Hi, thanks very much for your reply. Was going to phone on Monday but to be truthful the way I feel at the moment, I really don't want to go anywhere

[AgedCrone in reply to CarolMcl]

I agree Carol....I have often been told "you might as well feel ill on a sunny beach as at home".....but it's not as easy as that is it?

If I have ever forced myself to travel thinking I'm being a wimp & I'll feel better 'when I get there' has always backfired on me.

Take your time....get to a place where you can look forward to going away, not be on tenterhooks wondering what can go wrong.

At least if the sun keeps shining you can put your Sunnies on & pretend you're in the South of Fance😎!

Keep badgering away at your doctors to get you sorted.

[CarolMcl in reply to AgedCrone]

Thanks so much, I will do, getting so fed being "ill" and not enough answers

[AgedCrone in reply to CarolMcl]

It's never ending isn't it? To crown it all I have just woken to find a bloomin' great stye on my eye...granny would say I'm run DOWN more like fed UP in my book!

Do hope your doctors give you some help very soon....enjoy that holiday when you go!

[CarolMcl in reply to AgedCrone]

Thanks. Never had a stye in my life until this year, now had 2!! I'm getting quite dehydrated now, finding it very hard to drink as I feel really nauseous, I've vomited everyday except Wednesday. Thinking about it, that's the only day I didn't take Azathioprine?? Started back on it again on Tuesday

[AgedCrone in reply to CarolMcl]

When do you see your doctor...try to look really really poorly...no make up at all...& really emphasise how bad you feel.

If your aren't diabetic try sucking fruity ice lollies ..I find they are easier to keep down than plain water.

I'm a healthy looking person & I'm sure my GP sometimes looks at me & thinks "Oh it's her again".. Luckily my rheumy nurse keeps my GPon her toes by virtually explaining the ins & outs of my problems None of the GP's at my surgery have a clue about advanced RA or Lupus.

Try to keep positive .

[CarolMcl in reply to AgedCrone]

I won't need much emphasis on how I look/feel If the image ive just seen is anything to go by. Don't have a scheduled appointment with my rheumy until the 14th May but going to get a an appointment with my GP tomorrow . The "oh it's her again" I can totally relate too. Prior to my diagnosis, I had that for a few years even though I was known to have Raynauds and apparently have had positive blood tests for scleroderma for a long while! I may add I don't have scleroderma just test positive for it

[Ianrussell69]

Sounds nasty

[CarolMcl]

Hi Ian. Yeah not the best of times, just feel it's one thing after the other

[Cas70]

Oh you poor soul - what a dreadful experience. I think the advice to ring your insurers is excellent. The way you are feeling it maybe you don’t want to go anyway. I don’t understand why they operated? They are all so reluctant to diagnose! It must be a worry - pericarditis is serious and maybe you should chase your Doc and rheumy rather than travel. Probiotics help with all over after such high doses of antibiotics. Do rest and let us know how you get on.

[CarolMcl in reply to Cas70]

Thanks Cas, really appreciate your reply. I'll give anything a try at the moment as I feel so horrible. Haven't had much of an appetite so basically been living off of weetabix the previous few weeks, just feel nauseous at the thought of eating

[Cas70]

A scary living nightmare for you - please see a Doc asap. Try drinking Smoothies? Dr gave me bananas or boiled white rice with peas (!) once when I was ill and it slowly worked. Good luck, keep fighting. C x

[CarolMcl in reply to Cas70]

I had a slice of toas yesterdayt and an ice lolly which had been suggested with no epesodes of vomiting 😊. My son is going to make a smoothie later today. Thanks again for the advice

[whisperit]

Uggh, what a miserable experience, and a horrible dilemma. Sadly, I'm all out of advice. Sending warmest wishes (no ultraviolent radiation involved) and hope that you feel 100000000 times better, stat (can this be prescribed?) x

[CarolMcl in reply to whisperit]

Thanks Mike, i so wish it could be prescribed. I have been keeping up with your news, I really hope you see some sort of improvement soon. Shocking how much you've had to suffer, again because they know better. Take care x

[misty14]

Hi Carol

So sorry to read what a dreadful time your having!. You definitely need to see your GP about this persistent vomiting. He might also be willing to write to your Rheumy to bring your appt forward as they can treat pericarditis with anti- inflammatory medication. If he won't you can ring the clinic and ask to go on cancellation list. Did you get any treatment for it after having all those tests done?. As a persistent sufferer of it myself I know how painful and scary it can be. You can also have nausea with the chest pain as well!. Over the years Mine has been treated with an NSAID Celebrex, extra steroids and latterly colchicine. This has been a really good treatment as its a stronger anti- inflammatory drug they give for gout but they've found it's also effective for pericarditis!.

Any infection or procedure you have can easily cause a flare of these illnesses and I think this is what has happened to you hence developing the pericarditis!. What medication are you on for the lupus?. Maybe this could be increased to help you thru this particularly tough time!. No wonder you feel so tired and low, you've gone thru so much!. Good luck with your GP . Keep us posted and I hope you feel better soon. X

[CarolMcl in reply to misty14]

Hi, thanks so much for your reply.i tried 40 times this morning to ring the GP but received no answer, I unintentionally fell asleep and when I phoned back, all appointments were gone. I've got an appointment to have bloods taken on Wednesday morning so will just appear in person to get an appointment. I was given colchicine whilst I was in hospital. Presently I take hydroxy 400mg daily and also restarted Azathioprine again. Feel so fatigued but if the vomiting/ nausea would go could cope a lot better. The thought of 99% of food makes me feel ill, even struggling to take enough fluids and I've always drank a lot. I can't remember the last time I felt hungry. Thanks again for all your advise x

[misty14 in reply to CarolMcl]

Monday's are always hard to get thru for a GP appointment Carol. You really need advice about the vomiting and taking your drugs. It's bad you can't drink as you'll become dehydrated!but you must feel awful. See if you could speak to your GP. Say it's urgent. A lot of surgeries now do telephone appts. Good luck for your bloods on Weds. X

[CarolMcl in reply to misty14]

Hi, my mum is just off the phone. Apparently she went down to the surgery and demanded an appointment!! Our practice is very short of GP's at the moment due to sickness/bereavement. Anyway, what she lacks in height she certainly makes up for with spirit and has managed to get me a booked appointment for Wednesday afternoon. Go mum 😊. On the positive side, I've managed to eat half a weetabix and half a banana with no ill effect along with a small glass of water. Will try to take more fluids but not push any further diet today. Heres hoping x

[misty14 in reply to CarolMcl]

Well done mum Carol!. Don't we need them at times like this. Glad your beginning to eat and drink . Do hope weds appts go well for you. X

[CarolMcl in reply to misty14]

Thanks very much x