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LUPUS UK
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~ swelling to face, hands, legs and feet.

Hi. Wonder if anyone could give me any advice please.

I have arthritis after my spinal fracture 2 years ago but now my G.P is testing me for #Sle Lupus ( my Aunt has it) .

I am getting poorly if I have came into contact with anyone with a virus.

At the moment I think I have the start of a chest infection, my eyes and hands and feet are extremely swollen.

I have been given Oral Morph a 300 ml bottle 2 weeks ago.

I have been taking 25ml's a day in 5ml doses and I'm running out.

I can't take the pain.

Is swelling and redness a sign of Lupus? Also under my breast bone is swollen.

I need to be well as I have children and can't go into hospital x

If I tell my doctor that 5ml of Oralmorph every 4 hours is not working will he understand?

My. Whole back, hips an legs are in agony and with this cough my back pain is through the roof :(

Any advice would be great.

Thanks for reading.

13 Replies
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Hello jenwren,

I hope you don't have to wait too long to get back to your GP to get some helpfull results.

I have SLE and i think Its possible that being prone to infection, swelling and redness 'could' be related to SLE. Having said this it really could also be caused by so many hundreds of other things - I'm definately no medical expert.

With an SLE diagnosis it's routine for Drs to check your kidneys out. I'm a bit of a deranged looney kidney obsessive and I pretty much tell everybody on this site to make sure they get their kidneys tested even if they're only suffering from an ingrown toenail.

For me, I've spent most of my 33 years with SLE as an outpatient, with only very brief stays in hospitals - the longest being just after diagnosis. Mostly its just a week here and a few days there sort of thing.

ps. Given the amount of pain you're in, I think you're Doctor would have to be pretty hard hearted not to give you the oralmorph you need.

I hope you get this figured out and can feel better soon.

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If that dose of oramorph is not controlling the pain I strongly suggest you contact gp again asap.Have they seen the extent of the swelling and assessed you for a chest infection.I have disabled kids so know how you feel about the hospital but you have to be well to keep them ok.Phone up or better go in to gps tomorrow and ask their advice as maybe anti inflammatory ,steroids or/ and antibiotics might be needed to treat the cause of pain as opposed to just tasking more opioids which can be detrimental in high doses. Good luck and hope you get relief soon

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Thank you for the replies, I really do appreciate it x

I went for my bloods today and the blood lady said to me " Your not well are you, I can tell ".

Both of my eyes are swollen today, I have had my kidney function and liver function tested along with 6 other blood tests.

I am allergic ( highly) to anti inflammatory meds, so I have no other choice really x

Thank you all for replying x

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Hi and I am the same in allergic to anti inflammatory meds and adverse reactions to steroids and a few others but the gp knowing your sensitivity to certain types of meds they should be doing far more and far quicker than it seems.If the swelling increases at all you really should get seen as soon as even if it means a trip to walk in centre or a&E as if it spreads to mouth ,throat ,chest etc it could seriously compromise your breathing.

I hope very much that you get answers and treatments soon .

Only nagging cos we care about one another on here x

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Thanks, I will go if it gets any worse over night x

I do appreciate you caring, thank you x

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I would go along with littleeffie and not wait to get the swelling you have attended to as quickly as possible.

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I have a doctors appointment at 11 this morn x

So hopefully they will sort me out.

I'll let you know how I get on later today x

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Hello.

I'm really hoping the Doctors have a good answer for you today.

I'm also hoping that you're holding up all right mentally and physically at the moment.

Thinking of you !

I'll keep an eye out for how you get on today.

spot. xox

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I hope that you are able to get a diagnosis to explain your symptoms soon so that you can begin treatment to alleviate them. Would you like some more information about lupus? You can order or download one of our free information packs at lupusuk.org.uk/contact-us/

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Yes please Paul, thank you for replying.

I shall order one now, thanks for the reply.

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Thank you all for replying x

Thank goodness I have found somewhere to talk things through with people.

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Hi all I'm back, some of my bloods are back, my inflammatory markers are really high...

My doctor said I defiantly have an underlying disease and thinks it's Lupus xx

She is fast tracking an appointment for the rheumatology clinic for me x

And is ringing me Tuesday morning x

She has gave me more Oral Morph so I'm not in as much pain x

Thank you all for caring xx

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Hi.

I'm not happy that you're sick but really happy that you're close to a Lupus diagnosis so you can get some proper treatment and get rid of those nasty symptoms.

There's a squillion different immunosuppresants out there and I'm sure they will find the right ones for you.

Sounds like you will be feeling better soon. - and very glad to hear your Doctor is fast tracking you !

Make sure you look after yourself and take things easy in the meantime. : )

spot. x

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