Newby I think

Hi

When I look back my symptoms started about 4-5 months ago. Exhaustion, painful feet, knees, night sweats, hot body temp during the day, mouth ulcers, diarrhoea on and off for no reason, swollen ankles and feet, stiff legs and feet on a morning. But I put all that down to working full time, 46 yrs old, over weight and a house and two boys to look after on my own. Then on 1st September I started with an itch all over my body and I mean everywhere. I'm a health visitor so considered all the usual causes, body products, washing powder, food and took an antihistamine. 4 days later after very little sleep from scratching I consulted my GP who took blood. The results showed an inflammatory process somewhere in my body. He ruled out my kidneys, liver, cancer, blood disorders and anaemia so decided to screen me for RA. The itch eventually went after 10 days.

As I waited for the results I had a relaxing holiday with friends in Kos. I laid in the sun, eat sensibly and didn't drink too much. But as the week went on I felt worse. I was utterly exhausted and getting worse as my friends were pepping up. Constant pain in my knees, feet and what I can only describe as a fuzzy feeling from above my knees down which contributed to the shuffle foot steps I had to use or I think I would have fallen over. My feet and ankles were constantly swollen and got worse whilst I laid on the sun bed!

I could hardly walk off the plane, got home slept and the next day was just the same. I tried to work for two days but I was exhausted and my symptoms were no better. I saw the GP who told me the Rheumatoid factor was negative but the lab suggested screening for Lupus and sent sample to Leeds for ANA.

I am now off work some days I feeling a little better others all I can do I sleep. If I do anything I'm shattered and feel like I've walked a marathon. GP has given me Naproxen and made urgent referral to rheumatologist at Airedale general hospital near Keighley Which is on 28th October.

Would be good to here from others who have experienced similar and any advice gratefully received. I've read up on lupus and I'm a little confused now because blood tests don't seem to be conclusive. All the symptoms seem to fit apart from my skin is ok. If this is a flare up how long will it take me to feel good again?

Louise x

7 Replies

oldestnewest
  • Hi BurnsallBabe,

    Unfortunately Lupus is one of those hideously diverse things so your skin may well be unaffected other than the occasional itching. We all have our own slight variations on the theme.

    I'm impressed they got you in to see the Rheumatologist so quickly! Good luck with them and I hope they can get you started with a good treatment plan and make you more comfortable.

    Take care of yourself,

    Jojo

  • Thank you jojo its nice to hear from someone who understands.

  • Hi Burnsallbabe,

    Welcome to HealthUnlocked, i hope that you are settling in well and find it useful.

    I can offer you an information pack which contains a few leaflets and booklets on lupus and the symptoms if you think you'd find it helpful? It also explains in detail about the process of diagnosis and what is involved which i think will benefit you. Just send me a quick email or a private message with your name and address and i will pop one in the post for you. hayley@lupusuk.org.uk

    Best wishes,

    Hayley

    LUPUS UK

  • Hello. I have been diagnosed with sero negative RA and hypothyroidism with secondary Raynauds and Sjogrens. If you go to NRAS HealthUnlocked community you will see that about 30% of those with RA/ inflammatory arthritis are sero negative (negative for rheumatoud factor). I put a question on there the other day about whether RA symptoms rotate and several people explained how their RA started - very much as you describe. There is so much overlap for some - a few have very clearcut, classic symptoms but many of us don't.

    It is really good you have an appointment so quickly and hopefully you will get clarification - although some of us just swim around between various conditions/ diseases. Good luck!

  • Saw my GP this afternoon who informed me by ANA is normal but my vitamin D level is very low...... Confused and exhausted.

  • Don't give up. My ANA has been mostly negative (and all other antibodies) for the past 14 years yet I have a dx of Lupus type UCTD for which I need immunosuppression. Lack of antibodies just makes diagnosis a little less clear cut but a good Rheumatologist will know . .

  • Hi Louise,

    I have experienced the same when I was 14. My joints in my ankles, knees, elbows, wrists and fingers flared all at the same time. I struggled to commute to school as I went to school in central London. It was awful! Mum thought I was pulling a fast one as I didn't want to wake up, go to school or do anything! I was completely dibilitated and in pain beyond pain I'd ever felt.

    I was relieved to get a diagnosis, start drugs and get some decent pain relief. Also, to be able to have an explanation why I felt like rubbish all the time.

    19 years on, taking regular medication Helps A LOT! The fatigue NEVER goes away but the joint flares are a lot less frequent and I don't have attacks in all joints at the same time like I used to.

    Listen to your body, REST surround yourself with people who can offer support, take your medication-(steroids such as prednisone can help speed up recovery) Flares can last for a week or two or even months. I know it's hard and isolating during a flare. People look at you and think there is nothing wrong :(

    I hope your flare eases soon my lovely, take care of yourself

    X

You may also like...