Struggling : Hello I am 36 and I just got my lupus... - LUPUS UK

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Lovely87112 profile image
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Hello I am 36 and I just got my lupus diagnosis. it really sucks I hate being tired and the pain and taking all the pills on top of lupus I also have RA. Ha ha it's gotta be a joke right i mean who did I pissed off in a previous life. well any how has anyone found something that helps you out the most during Aunt Flo's visit. I could really use some help.

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Lovely87112
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Silvergilt profile image
Silvergilt

I guess it depends upon your symptoms; I'm regularly anaemic so when I have my menses, I treat myself to a burger or steak (which I don't tend to eat very often). I also tend to stop trying to be stoic and take full pain meds at night as my hips hurt more at night. Finally, I make sure to keep taking my mini-pill as it helps to regulate my hormones to regulate my menses so I don't get more anaemic. Mostly, I just give myself extra TLC. Chocolate helps!

I wish you ease. And, maybe, chocolate.

Penguintaz profile image
Penguintaz

Hello "Lovely87112,

I myself have only been diagnosed with lupus for just over a month. I am sad to hear how much pain you are in! I know meds suck but they help and over time you can take less :)

I am yet to have my period while on meds but should be soon. As Silvergilt says it may depend on medicine and your symptoms. In general though eat things with iron and provide energy! Also rest lots

Beverley_F profile image
Beverley_F

Hi, Like you I have both RA and SLE Lupus and ill be honest its hard, you have to learn to pace yourself and not to do too much when the pain is at its worst. Ask you GP or Consultant about being referred to a pain clinic they can help a lot. I hope you start to feel better soon

johare profile image
johare

Hi, I posted a moan yesterday about anaemia. I definitely drop with regard to fatigue after my period, although hormonally my mood lifts. Its as if you feel you want to do more but a syringe has drawn the life out of you. However, I am probably going through menopause now so mine are heavier. I agree with above. Pacing is important all the time but the week prior to my period I find resting more important. My RA also flares more likely during the week of my period. That week I use more regular pain relief. Using a diary may help you. Write down, pain and what you take. How well you sleep. What you eat. I find additives like colours in indian meals really flare RA. You may need to do this for about six months before you see patterns. All the best.

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi Lovely87112 ,

I'm sorry to hear that you are having a tough time with your symptoms at the moment. Have you been started on any treatment for the lupus?

If you need more information about lupus, you can request or download one of our free information packs at lupusuk.org.uk/request-info...

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