Struggling with Lupus

Hi everyone, I thought I'd join as I've seen a lot of great posts on here. You'll have to excuse my rant below!

As a quick background, I'm female and I've had various symptoms for a long time now, starting with joint pain and fatigue at 16. My worst symptoms are chronic pain, joint pain, stiffness and fatigue but there are many more. I've had various diagnosis's in the past which have been wrong such as endometriosis, and my current diagnosis is Fibromyalgia, but I'm now being treated with hydroxychloroquine which has helped substantially with my joint pain and I'm waiting to see my rheumatologist in March for the first time in 8 months for a final diagnosis, or possibly more tests.

One of my GPs is sure its lupus as I have tons of classic symptoms and respond to the DMARDs, but can't give a diagnosis without a rheumatologist seeing me again.

But basically, I'm completely at a loss with what to do. Pregabalin barely helps the chronic pain and I've now been told to stop taking Naproxen/Diclofenac as my stomach is too damaged from years of taking them and I'm at risk for a bleed if I continue. I can't take painkillers like codeine as they make me sick. I'm having a real flare up at the moment with rashes on arms, chest and face, I keep getting feverish and nauseous and feel like I can't control my body temperature, the muscular pain is awful and the joint pain is noticeable again (the hydroxycholoquine pretty much got rid of it while my symptoms weren't so bad) and I've had really bad bursitis in my hip for a few weeks now.

I'm only 22 and I've just gone back to education after a 5 year break where I worked full time, and I'm barely coping. It's so difficult finding anyone who understands what it's like to feel utterly exhausted and being in too much pain to do anything normal. I feel really lost with lack of help from my doctors and specialist and just not being able to function like a normal person my age in general.

Does anyone have any advice to offer when anti-inflammatories can't be used for pain relief, or any advice to pain relief in general?

Also any advice on coping with flare ups would be great, bearing in mind I have to miss as little of uni as possible so a day in bed isn't really an option unless I physically can't cope!

Thanks guys,

Nat

7 Replies

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  • Hey hun sorry your having such a horrible time at the moment. 22 myself symptoms started at 13 and didn't get a diagnosis till this time 2 years ago iv got sero negative lupus just a fancy name for lupus but no matching antibodies. I'm a peculiar case but like yourself fatigue muscle pain joint pain is chronic and horrendous especially lately. I think it's worse cause I feel like a granny when I'm not. It's horrible when it completely invades your whole life!! Did the GPS nothe offer any gastrointestinal tabs to stop the NSAID's from irritating your stomach might be an idea? Firstly pain sucks especially when uncontrollable rest relaxation and hot baths are a godsend also try fruit teas I found it sometimes helps something warm no caffeine but try find an all natural one as it helps the immune system and can reduce pain. Also iv found being in a pool helps believe it or not its amazing for your joints and the water takes the pressure off aswell. As for uni rather than taking time off have a word with your lecturers and see what they can do some can offer for days when your in a really bad way to maybe do a part home course for only days when your bad x

    Hopefully you will feel a little better soon x

  • Hey Squeeshy

    I know exactly what you mean - walking around like an elderly lady and taking as many meds as one!

    I've been taking esomeprazole or similar more or less as long as I've taken NSAIDs, he's just told me to double my dose for now because for about a week I haven't been able lie on my front the pain in my stomach is so bad when put under pressure.

    Honestly, what I'd give for a bath! But sadly living away from home means i have a shower only :( I'll make the most of my partner's one over the Easter break, haha. I'll have to go and hunt for some natural teas and have a try. Chamomile used to help in the past for getting to sleep, thinking about it.

    My lecturers are great and for any important things I miss I have a mitigating circumstances agreement so essentially, I can get away with rarely going in to classes, but it's really difficult when you miss out on that much work - the powerpoints they post online never go into as much detail!

    And thanks, hopefully we'll both feel at least a little better soon! xx

  • I know exactly what you mean about it all trust me...if no hot soak is available try honestly and don't laugh putting a towel in the microwave it works amazingly as a hot compress and cause you can wrap it round works so much better than a hot water bottle..deffo give them a try also something with ginger or buy the shakeable herbs as it's great for the immune system that's lovely of them but I know it's not the same have you asked for days you have to miss if someone at uni could record the lecture would work out great and wouldn't miss a thing x

  • Do be careful with things that are 'great for the immune system' as it's possible this could make the effects of your lupus worse. As lupus is an autoimmune disease, supplements like this can be harmful to you rather than helpful. Please do check with your GP before trying these products.

  • I cook a lot of meals using fresh ginger or ginger powder - I adore the taste! I'm trying to eat healthily too to avoid making anything worse with bad diet (or at least, as healthily as you can on a student loan!)

    Yeah that's what I tend to do, or copy notes. Hopefully I'll be able to drag myself to uni as much as possible. I also got diclofenac gel today - not as effective as the tablets but it's helped with the bursitis :)

  • Welcome to the community, Nat!

    I'm really sorry to hear that you're having a hard time at the moment. I really hope your symptoms ease up soon. Hopefully the rheumatologist will be able to make some suggestions in March, alongside clarifying on your diagnosis.

    If you'd like some information about lupus we've got a free information pack available. You can either send off for a physical copy or download a digital one here: lupusuk.org.uk/contact-us.

    Additionally, I think you might be interested in reading our factsheet 'Lupus: Fatigue and your Lifestyle' along with some of our other publications here: lupusuk.org.uk/publications.

    I'm also sorry to hear that you're struggling to find anyone who understands what it's like to feel exhausted all the time. We have a number of support groups around the country that you could try in order to meet other people in similar situations. There's a list of all of our regional support groups, with contact details, on our website: lupusuk.org.uk/regional-gro...

    George

  • Thank you, and thank you for the information. I'll be sure to have a good read through!

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