LUPUS UK
21,387 members16,925 posts

fed up with constant pain

so fed up in constant pain but told i dont have butterfly rash so doubt full i have lupus even though i have pos ana and pos ds dna dont no what to do now every joint hurt :-(

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As far as Ive been told by a rhumy nurse not every lupus sufferer has the rash

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who told you this if you dont mind me asking?

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My rhummy then discharged me but a diffrent type doc at my local hospital has wrote to my gp saying I need to be review by a diffrent rhymm

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I think that is a good idea even though im no medical expert as the fact they said because you do not have a rash you prob do not have lupus does not sound right to me. They should at least investigate more. I too havent got the rash.

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Got pos AnA ds dna every joint in body hurtseven down to my fingers

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do you have any other symptoms?

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My white cell count goes up and down and constant tiered that about it ah getting forgetfull ie I needed a pen few weeks ago I. New what needed but couldn't think what was called stupid thing like that

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It does sound like lupus symptoms. It is a very good idea to see another rhumey so they can get to the bottom of it. Like you I am still not formally diagnosed. Its such a long process. Have you been given any meds to help with your symptoms?

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No take co dydromol and another doc doing injections in my right knee to help with pain when walking

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Oh ok try asking your Gp for anti inflammatory's see what they say. Well off to bed now keep in touch let me know how you are getting on :-)

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I don't think everyone with lupus has a butterfly rash. I can just be rosy cheeks as in my case. I've had lupus for years but it's only in recent years that my cheeks have gotten redder. I think it depends on what other symptoms you have.

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I have Lupus SLE but I do not have the rash.

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I'm another that has only slight flushing, worse during flare but easily disguised with light foundation .........hence we all get the "but you look so well" comments!

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30-50% of patients have rash / dermatological involvement.

Over the course of the illness it has been reported that up to 65% have experienced some form of dermatological manifestation.

The joint pain and brain fog / neurological manifestation you experience may or many not be lupus related ... but it needs to be sorted.

A second opinion would be very wise.

To bethsuejane:

"but you look so well"

possible response (on a printed card as likely too fatigued and in pain to speak) :

Thank you but my disease does not necessarily demonstrate on the outside. The damage occurs internally and it is potentially fatal ... so ... I am really not well but thank you once again for the compliment.

:-)

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Hi sorry I'm a little slow to reply. I've been diagnosed for 14 years and never once had the classic facial rash. Personally I think some GPs think that is the most important symptom :-) NOT.

I hope that very soon you will get sorted with good pain relief. The best I have found is a patch, similar to the stop smoking patches, which gives a slow release of morphine. It helped me with pain, only thing that stopped me being awake night after night in agony. The one downside with these patches is that your body will start to tolerate them which means increase in dose - do look into this if the patches are an option for you.

I do hope you get your bloods back soon and get the help you should be getting.

Take care.

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Hi I was diagnosed with Lupus SLE 18 years ago,and I don't have a rash on my face..it's about the only part of my body that's never been affected by Lupus....

Good-luck

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