Please help, new here

[Jones88]

Hey all!

So I was first diagnosed with lupus back in 2008/9 (can’t quite remember) I was really ill, severe fatigue, Rash and joint pains, after being told by gp it was just viral numerous times I ended up in A&E and then admitted and lots of blood tests and scans done which is when they told me I had lupus and I was put on steroids and other medications that I can’t remember, young and naive and let my mum just take control! I consider myself lucky as I’ve not had any big flare ups until now, but I am now in agony, it started off with a sore foot, then it was my knees, now it’s my elbows and fingers/hands, the pain is really dragging me down, I have two young children And I’m struggling 😩

I also have pain when swallowing in my throat and jaw/ear, which I’ve never had before! My bloods have all be “reassuring” gp said the CRP and ESR are quite

Normal, but I’m in agony, ibuprofen isn’t helping and I’m not getting anywhere with the gp, honestly don’t know what else to do! Is there any other test I can ask for? I’m now starting to worry if it is lupus or if there’s something else going on, my mind is working overtime

It is absolutely horrendous! 😢

[Horsewhisper]

Hello Jones88, welcome to the forum 👋 and I hope you find lots of helpful information here. There are numerous people here from around the world and quite a few are available pretty much anytime of the day and night who can offer help and support. The Lupus UK website offers loads of really useful info and guidance and that would be worth checking out too.

I am sorry to hear that you were diagnosed with Lupus at such a young age and to have a flare up now whilst raising 2 young children must be extremely tough on you. Although your GP has said your CRP and ESR are normal, many people have these normal blood results even though they are in a flare! I am one of those people! In addition to UCTD, I have recently been diagnosed with GCA (an autoimmune disease that affects the lining of the arteries in the scalp/jaw and sometimes the occipital nerve) and ended up in A&E with a very high temperature that wouldn’t respond to paracetamol or ibuprofen. They thought I was heading for a sepsis episode and although ESR & CRP were normal, luckily the doc thought of GCA. On treatment (steroids and methotrexate, hence that’s why I am awake right now at 04.00 😖) and starting to feel ok-ish.

I think it would be sensible to persist with your GP and state that you were diagnosed with Lupus about 12 years ago and that you think you are now having a flare. Tell your GP that you are really struggling with the pain, Ibuprofen is not doing enough for you and that it is impacting on your life with your children and you need help. Do ask your GP to look back in your records for the Lupus diagnosis and ask for a referral to a Rheumatologist. This expert can look after your ongoing care and prescribe more appropriate treatment (if needed) that your GP cannot from the outset (but can as an ongoing regime as directed by the Rheumatologist.) If you think you need moral support, take your partner, a member of your family, or a friend to the appointment. Take photos of swollen joints, any redness and rashes and any other visible symptoms to support what you say too. Write everything down that you want to say in a list, before you go and don’t leave the appointment until you are satisfied with the next steps. Sometimes you do need to be a bit pushy to get listened to and if you take this approach, your GP will realise that you are taking yourself very seriously and need help. Strange that it sounds, but it does work! Another test you can ask your GP for is an ANA test (have a google). If positive, it indicates that you may have an autoimmune condition of which Lupus is one of them. My GP brushed me aside with all sorts of rubbish (which I believed) for a good 10 years before I got anywhere - a neurologist ordered an ANA test to get to the bottom of my symptoms which came back positive and even then the GP said “you don’t fit the profile of someone with Lupus” she still wouldn’t believe me! Luckily, she retired and I have a super GP who listens and responds to my health situation very quickly now.

I realise that I have made a lot of suggestions here and there is a lot to think about. I hope it is of some use and hopefully by talking to your GP again you can make progress, start to feel that you are in a better place and get some respite from the pain. There is no need to suffer - all the very best of luck and do let us know how you get on. 🤞🤗

[LalSD]

Hello Jones88,

has your pain started suddenly or gradually?

Have you been isolating?

You can call 111 or 999 if this gets worse.

Do you have relatives who can cook for you? Or deliver your groceries?

You may have a flare up but if the children have been attending some play date or group/school, I wonder you might have something from the children ie bacteria/chicken pox etc? (I am only giving an example, I am not suggesting you have it).

CALL your hospital? Consultant? Which hospital do you normally attend?

I take brufen 800mg SINGLE tablet (CAN NOT TAKE 4 to make up for the dose, it HAS TO BE PRESCRIBED BY A DOCTOR) to reduce the inflammation.

I would normally suggest a natural remedy black castor oil for joints BUT I am not sure in your instance. It must be scary.

If it is any consolation, I have my lymph node swollen left side of my face, knees are so painful I can barely walk sometimes. Neck and shoulders leave me without breath due to inflammation everyday. I mentioned just to assure you it might be lupus related. Please keep us posted be safe.

Much love,

Lx