LUPUS UK

Feeling down

I have hyper mobility, mild asthma and connective tissue disease (probable lupus) I was put on a immunosuppressant back in July. They are strong so I said I didn't want my dose increased when I saw the nurse a couple of weeks ago. My fatigue reduced. I started to feel well again apart from when I come on my period. I've been put on the mini pill now and seen a gynaecologist and told to stay on the pill for a few months but not a lot they can do apart from taking my lining away or in the letter they said a hysterectomy. The pill really aggravates my hyper mobility in my hips. I've got an internal scan tomorrow to check for endometriosis as I have strep b streptococcus.

2 months ago my little nephew passed away and I've been left with anxiety. I'm anxious about everything now. Particularly about my health or my children's. My little one was sick tonight so alsorts of things are going through my head. My consultant said he didn't think it would affect my kidneys. But I'm feeling down tonight. My arms hurt so much to lift and my chest is tight, my hips are aching, I've come on too so probably not helping. Just feeling blah I felt the need to offload

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Sending love & hugs x

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Poor you - that’s a lot to cope with. So sorry about your nephew - so sad.

However I’m sure grief, hormones and anxiety will all be triggering your autoimmunity so if there’s any way of adjusting your mindset to focus on something gentle and happy that would be ideal. Maybe try to watch a feel good movie or read a happy book to your children - just try and do something that focuses on whatever makes you happy if possible. Imagine yourself in a place you feel peaceful and relaxed, bake something or have a lovely warm bath with nice smellies?

Take care and I hope you feel much better soon. X

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Hi nutler

I have almost exactly the same diagnosis and symptoms as you. As I write this I am sitting at hosp awaiting rheumatogoly app to discuss my hip/leg pain which like you is horrendous at my time of month. I am on hydroxychloroquine 400 for the past 6months and like yourself it has helped my fatigue but my monthly seems to flare up pains. Maybe he will suggest pill for me too.

This forum is so helpful just to no we are not alone in how we feel. So sorry to hear that your nephew passed away. I can appreciate your anxiety and worries at this time I think that we all would be feeling like that.

Xx

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Hi Nutler,

I am sorry to hear about the passing of your nephew, our thoughts are with you and your family at this time.

Lupus itself is a connective tissue disease. To find out how lupus is diagnosed, you may wish read our blog article on ‘getting a diagnosis of lupus’ here: lupusuk.org.uk/getting-diag...

We published an article on our blog about ‘managing fatigue’ which I hope you will find useful: lupusuk.org.uk/managing-fat...

We offer a free information pack which contains guides, factsheets, a list of helplines and a list of LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves, they are not medically trained; they are there to offer support and understanding. To download or request a pack, please click here: lupusuk.org.uk/request-info...

We published a factsheet on ‘LUPUS: and the Kidneys’ which you may like to read here: lupusuk.org.uk/wp-content/u...

We also published a blog article on ‘pain management’ which contains helpful tips and information which you can read here: lupusuk.org.uk/pain-managem...

Please let us know how you get on, all the best.

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