Need to ask a question

[Newly-diagnosed]

Hi

I have been back and forth to the GP for the last 12 months or so with various symptoms, fatigue, pains and burning in my joints down my right side, skin rash, headaches, brain fog.

First being tested for Fibro, but in December I had a nasty bout of tonsillitis, and since then the symptoms have been constant as opposed to just off and on (every 6 weeks, then every 4 weeks)

I have a rash that gets worse in the sun and the pains are unbelievable after I have been in (makes sense now as to why now of course)

I am just waiting for results to come back to confirm Lupus, I have never felt so fatigued in my life, until it is confirmed and we start a treatment program I am looking for advise on how best to manage by myself right now, how did you manage it, what did you find worked for you that may help me, foods to avoid, exercises that may exacerbate the symptoms, best way to manage during a flare up?

Thank you in advance 🙂

[Goldie49]

Sorry to hear you are suffering. I was diagnosed in 2019 and have managed with hydroxychloroquine daily one tablet since then. It takes a couple of months to kick in.

I also still suffer from fatigue but I have found that eating well - and for me avoiding gluten, sugar and dairy works well. I really notice my symptoms (aching joints etc) hit with a vengeance if I have processed or sugary things.

Also B12, iron and vit D important for fatigue.

[StriatedCaracara]

Video series I found useful:

Kaleidoscope fighting Lupus:

healthunlocked.com/lupusuk/...

Lupus Foundation of America:

healthunlocked.com/lupusuk/...

[MusicalFurbaby]

Hi Newly-diagnosed, congratulations on your diagnosis, and sorry to hear you have been in so much pain! Keep us posted on your treatment, but in the meantime, go easy with yourself. Pain makes you slower and means that everything takes longer, so pace yourself and allow extra time to do things. Have more breaks before, during and after big tasks. Realign your expectations—you may only achieve one thing on that to-do list! And of course, be patient with yourself. Adjustment will take some time, as will treatment.

I found it helpful to avoid high-carb foods, such as bread, rice, pasta and potato. Exercise exacerbates my symptoms, especially dizziness and fatigue, so I do it sparingly—but I do enjoy being in nature. So sometimes I take a walk with lots of breaks, pausing to take photos, and sitting on benches soaking up the scenery!