Lupus don't understand this disease

[Cjgj]

Hi been diagnosed with lupus and don't understand what they call flare's do you have to have a rash to go with the flare .Got trouble with bad tummy pains very bad back ache tummy feels warm can anyone advise please x

[Hamptons]

Yes, it is a confusing thing. More confusing is that how flares present and affect you vary from person to person. Some have rashes, joint pain. I tend to ache all over and have stomach issues. It is in some ways your journey. But, we are all here and understand the impact of the symptoms and how to manage them. You will find even professionals don’t always know which can make it even harder and more frustrating.

I would recommend a GP visit as that does not sound like an ordinary tummy ache, maybe some inflammation. In doubt check it out.

[Lily77]

Dear Cjgj, a "flare" is a period of heightened disease activity when symptoms become worse. As there are a range of symptoms typical of lupus including pain, swelling, rashes, fatigue, ulcers, clamminess and depression they can all come into play or it may be limited to your usual symptoms - just worse than usual or for a while. Sometimes the trigger for the flare can be identified such as overdoing it, eating incorrectly, hormonal changes, stress but it they can also often happen for no apparent reason at all and have no definable pattern. During a flare, the usual protocol is to rest and take things very steady, you may need to take extra pain medication. I need to eat lightly and sip plenty of fluids. If the flare is very bad then you should contact your rheumatology team and speak to a nurse. It is not uncommon for rheumatologists to prescribe extra steroid doses to cope with flares for example. I trust this helps, take very great care of yourself, with very best regards, Lily

[Cjgj in reply to Lily77]

Hi thank you for your reply I am supposed to see a specialist September saw a doctor on tue he said it was all reflux gave me ranitidine if this don't work come back in a week don't seem as if you get a lot help trying to pick things up of here to help myself as some times it does get you down speak to you soon

[Lily77 in reply to Cjgj]

Your welcome Cjgj. Also, I think "feeling down" is a symptom of flares and I am a psychotherapist. I have a tracked a pattern of feeling depressed - useless and hopeless - along with physical flare symptoms which then lift as I feel better. So when I feel like this I tell myself "It's not me, it's the lupus" which helps me gain perspective. I am glad you are seeing your specialist soon. It is good to write down all your physical symptoms and take the list to the meeting, as it can be easy to forget them on the day. Wishing you the very best progress, with my very best regards Lily

[Paul_Howard Partner LUPUS UK]

Hi Cjgj ,

If you would like some information about lupus, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info.... We also have our full range of publications available to read or download at lupusuk.org.uk/publications/.

As others have said, a flare is generally defined as a period where you are experience more (or worse) symptoms as a result of an increase in disease activity. You could also experience new symptoms as part of a flare. Not everyone will have a rash as part of a flare.

Have you discussed your stomach pains with your doctor? Do you think they are caused by the lupus or could they be a side effect from medication you are taking?

[Cjgj]

Hi thank you for reply I am not on any meds for lupus just blood pressure tab thyroid tab water eyegel statn so don't know git to see specialist September just worry about this all the time

[Krazykat26 in reply to Cjgj]

Try not to worry Cjgi 💐 it will just make u feel worse..stress drives lupus!!

U have come to the right place here..lots of support n cyber hand holding 🤝🤝🤝u will learn about all things 'lupie'..U R NOT ALONE!! 😽

[Cjgj in reply to Krazykat26]

Hi krazykat26 thank you for that we do need support of us lupies gives foot information and you feel your not in your own xx

[Princerogers777]

Hard to know whats lupus and what can be a seperate problem, i mostly get fatigue & joint pain maybe liw grade fever, never whole body just a hand or foot , knee ,elbow fingers mostly but i have stomach issues too now they gave me allign probiotics seems to help just watch what u eat.

[Cjgj]

Phiillippoi did try Omeprazole but that gives me the rash so they gave given me ranitidine 150 in morning 150at night and they don't seem to give me the rash keeping fingers crossed

[Lily77]

Quite right Alexa, as soon as I hit send to Cjgj remembered that I had forgotten to mention UV as a trigger! I am currently using two very large straw hats....religiously! Also agree about the feverishness. Very best regards, Lily

[NanaFifi]

Hi Cjgj

I’ve had Lupus and RA since the age of 20 (now60) as the others have explained, a flare up is a period of exacerbated symptoms. With me I know it’s the Lupus as opposed to RA because of the major fatigue I suffer when on a flare up. I also suffer tummy pains and generalised aches and pains. Everyone has different symptoms but I think that most people suffer from fatigue. Good luck in getting your symptoms under control.

Fiona x