LUPUS UK
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My illness probably begun around 6 years ago when I just couldn't shake off tiredness, luckily for me it came and went so I just put it down to having a young family and hectic life. Odd bouts of unexplained illnesses came and went but again with lots of time in between so at that point no need to piece anything together. Then I got my first ever pylonethritis infection which got very serious very quickly resulted in a very lengthy hospital stay. From then on Kidnet infections came every year upto 4. Every time ending up with a hospital stay as IV antibiotics only helped. My first referral was to urology as my white cells in urine were (still are) abnormal (way to many). After many invasive and scary tests the outcome was... I need to take cranberry supplements 😀... Gp was left scratching his head and referred me back within the year as white cells too high. Round 2 of invasive tests and scary possibilities for the next conclusion to be I (are you ready) Drink too much caffeine.... At this point after many different trials of antibiotics between Gp & myself we managed to find one that stopped hospital visits & at this point I knew the second an infection was coming so would always starr a course straight away-glad to say this still works for me now.

2 years ago the tiredness came back hugely but I now had 3 young children and had just lost my Mum so had a million reasons to explain to myself why life was painfully exhausting. Then a year ago my feet gradually became stiffer and stiffer in the mornings. I visited my Gp when the lumps on my tendons appeared and the swelling on both feet became so big I had to buy bigger shoes 😀. He was perplexed as he said it's Achilles tendinitis but scratching his head as to why I have it on both feet-he even asked if I had been in a car crash 😂.

Tried swimming to help with swelling and stiffness.. Lasted 8 weeks then what felt like overnight my body was top to toe in agony. My ankles now felt like they would snap, my neck & shoulders felt like I had a bag of bricks hanging from them Every day and I just couldn't keep up with life at all.

After lots of bloods and head scratching from the Gp he diagnosed Polymyalgia Rheumatica. Here I got introduced to prednisone... Woah they blew my socks off! They helped immensely BUT i hated the "feeling" of them.. I tapered down quickly and within a week of being off them I had to start a second course as I couldn't get out of bed again.. In between this I had fevers, odd pains & swelling, my eyes felt gritty, huge rashes & lumps behind both ears..

In Oct of last year I met with my rheumatologist for the first time and finally had someone telling me "We're going to get to the bottom of your quirks" was sent off for various bloods and nerve testing etc..

Second appointment comes, I now have a lovely red rashy face and ears and 1 positive blood result for lupus but others negative. I leave with the diagnosis of SLE (at this poinr I'm having a major flare) leave with a shot of prednisone and a course of hydroxychloroquine. I'm a month into treatment. and have had to go on another course of prednisone as I'm barely active again- I have no idea what I'm doing at the moment. My husband has had so many days off work to look after our children on the days I can't.. I'm still working out my pattern.. So far it's pretty much If I leave the house to do anything thats me wiped out for a couple of days.

How have you all coped for so long? After reading many posts I'm in awe of so many of you holding down a job, being active... I can't cook a meal every day at the moment!! Will this ever get better? Or at least manageable??

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Welcome Purple :)

Gosh you cenrtainly been through a lot!

So now that you have a diagnosis and have started on treatment you should hopefully start feeling better. Have you got a rheumatologist? They'll be there to support you.

It took me a couple months to start feeling more normal after treatment started, I really hope you start feeling better soon Xx

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Thank you for your reply 😀.

I do have a rheumatologist, I must say she's brilliant. I'm back in May to review the meds as she's explained they take their sweet time to work!

Did the meds help get you back on a more even keel? I'm desperate for a snippet of normality with my life xx

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I would say the medicine helped yes :) But it does take a while for them to kick in Xx

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I was diagnosed with mild SLE in 2005 and have been taking plaquenil (hydroxychloroquine) ever since, they've helped a lot. Have other problems going on but most are manageable with the right meds...Hope you feel better soon xx

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Thank you for your response chrisj Xx

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I am so sorry you are feeling so rough and you have had to endure so much back and forth to Docs and hospital to get a diagnosis. I feel I have just read about myself I am lost for words at how similar our symptoms are I am just waiting for the day my blood test shows I have Lupus as yet this has failed to show up. Chin up lots of hugs

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Hi Klc48a,

I'm sorry to hear your having a bad time with getting diagnosed. I really had no idea about lupus until my diagnosis so have never thought to piece all my "quirks" together, I just thought my illnesses were odd over the year's, my husband was always calling me his weird one!

Have you suffered with kidney infections too?

Thanks for the hugs Xx

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Hi Purple83,

Welcome to the LUPUS UK Community Forum. I'm sorry to hear that you have been struggling recently. Hydroxychloroquine tends to take 3-6 months before it kicks in, so it is probably a bit early for you to notice much improvement from it yet but hopefully you will start to experience an improvement soon.

Pacing is very important with lupus to try and manage energy levels and maybe gradually improve them. You can find more information about this and tips for managing fatigue in our blog article here - lupusuk.org.uk/managing-fat...

If you need more information about lupus and LUPUS UK we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

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