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Severe flare - need advice please :(

357 Views 11 Replies 7 Participants Last post by  Maia

Since yesterday I have been in excruitiating pain :( I need your advice please on the do's and don'ts.

My symptoms are:

Severe aching joints - neck, shoulders, elbows, wrist, lower back, and especially knees :( I can't walk, lift my arms, turn my neck, get up from sitting. Pretty much cant do anything :(

Left lower back is extremely tender

Pain from right knee is also raising up my thigh and paining there also.

Blurred vision and eye pain

Head ache

I've been taking ibupofen (2 200mg, every 4 hours) but I know that I can't take more than 6 tablets in a 24 hour period. So now I'm stuffed!

What else can I take? Paracetamol?

Also, for the joint ache, is it adviseable to rub in some ibuprofen gel or massage the joints? Or, due to it being an inflammation of the joints would this aggravate the inflammation and pain?

In absolute pain... even struggling to type... or even sit :sad:
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If things as you say are this bad then perhaps you should consider phoning the emergency GP or even attending A&E! If you do remember to explain that you have been diagnosed but have not yet commenced treatment.

Paracetamol can be taken alongside Ibupofen - but as always perhaps confirm this first with a pharmacist for your own peace of mind (I'm only giving advice based on what I've been told).

Not sure whether you should use the ibuprofen gel along with the tablets 'that may be an overdose of the drug' - read the advice and ask a pharmacist. There are anaelgesic creams that you can use that I think wont interact would be are not very strong!

Hot water bottle or even ice packs could be tried!

Take care and get lots of rest!


PS - forgot! Blurred vision, eye pain and headache is something that should be looked on as an emergency regardless of the Lupus. If it were me I would sacrifice my free time and go to A&E for some expert attention today! Perhaps it will even fast track you back to the Rhuemie for all those meds to start.
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Hi there,

To be honest, if it is that severe, ibuprofen won't cut it. I would ring your GP as soon as you can and see if he can't give you a short burst of prednisolone to get you over it (as you're not yet on any other lupus meds and even if you had started them, they take time to kick in).

Other than that - don't try and fight it. Rest, rest and more rest. Definitely stay out of the sun and heat (just in case).

I'm afraid I can't help more...

hope it passes quickly,
Did add to my post! Just want to highlight that to you so that you can re-read!

Rest, rest and rest!

Well, just took my temp and thats high too 38.2!!

Might just pop down to my A&E :(:(
On your way then and good luck!

Dont panick about temp too much, it is high but not in dangerous level. A couple of my kids reach 103 bordering on 104 paracetamol + ibruopfen plus cool water on back of their neck (or a call bath) helps in the end!

Let us know how it goes!

Surferboy;515623 said:
Well, just took my temp and thats high too 38.2!!

Might just pop down to my A&E :(:(
Jersey girl here, sorry but what does 38.2 convert to in the US system?

Guess I should have paid more attention to the metric system and such when I was in school.:blush::blush::blush:
38.2 is just under 101F
Its equivalent to 101F

Here is a handy temperature converter link that I use

Hey guys and girls,

A very quick update on my situation as still not feeling none too good :(


My wife took me to A&E - and what a waste of time it proved to be :mad:

Having waited 2 and half hours to see a Dr, the short of it was the Dr didn't seem to give 2 hoots... or even know the full symptoms of SLE :eek: She kept saying the aches in the joints ARE arthritis :mad:

I explained the entire series of sequences that led me to being there (diagnosis last week, aches, temp etc). She asked if I had taken pain killers to which I said yes, loads, and they dont seem to be working.

I asked if she wished to do any tests. She said NO. She just kept suggesting that I go home and wait for an appointment with my consultant.

In the end she did take a urine sample and did a dip stick test, which showed urine but she said it was nothing to worry about.

She also had a look at my blood test results. Now wait for this severe lack of care.

I told her that I had had a test done on Friday - which was the 25th. She said "yup. we have those results, and everything seems to be OK. Your GFR is at 90 which is a little low. but nothing to worry about".

But to cut a long story short, the date she was looking at as being the 25th was not in fact the date of the blood test but was in fact my date of birth :mad: How reckless and dangerous could those sort of mistakes be!!!

I asked for medication, to which she said just take paracetemol!! I told her they too dont seem to be working. In the end, just to get me out she suggested morphine or codine. I opted for the codine.

I am still in severe pain. Can't move my legs or shoulders or arms. Temp going up and down like a..............

Oh, and I remember someone saying something about the GFR being important. I had a double check and mine is quite low at >90. Would someone be able to confirm how worrying this is please?

I'll be calling the rhumy dept tomorrow to demand an immediate appt as things are starting to get me down :sad:

Sorry for going off on one
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Hello Surferboy.
Nothing has happened to the NHS it has always been like this and very few medics know anything about lupus. Bit of a reality check, eh?

I'd have thought she might have given you some painkillers to tide you over.
Yes you need to see a good lupus doctor soonest and get something sorted out to relieve your present parlous state. If you can't get anywhere on NHS try the London Lupus Centre at London Bridge Hospital. £200 or whatever, very well spent to get a handle on your lupus status.

Good Luck-
let us know how you get on

Actually, a GFR of 90 is very good/normal. It isn't until it dips below 60 that it becomes a concern, and not until it gets below 35 that it becomes a serious concern! A "Perfect" GFR is said to be 120 but no one tests that high in real life I don't think ;) Your protein in the 24 hour test was slightly high, but not high enough to be truly concerned about. Definitely something to keep an eye on though.

Sorry to hear you had such a terrible experience with the doctor/A&E. I've had a few too... & I've never even gotten any pain medication out of them until I had a massive ear infection/ruptured ear drum! *lol* They are very strict about pain meds around here it seems - but overall I don't mind as I don't like how they make me feel and the side effects they have on me as well can be quite undesireable. ;)

Hope you get into the consultant soon, or can speak to your doctor about the most recent lot of blood tests & inquire about starting some lupus medication.
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