I'm new to this.....: Hi, this is me. I've been... - LUPUS UK

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I'm new to this.....

bexxy profile image
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Hi, this is me. I've been reading the posts here since last December as I believed I was a Lupus sufferer. Until now I've found the posts very interesting as a lot of the symptoms I've been experiencing have been highlighted on this forum which meant that I didn't feel alone or imagining such varied symptoms: chest pain, abdominal pains, spinal pain, pain and throbbing in all my joints, bowel problems, headache, fatigue, muscle weakness and recurrent UTI's(4 courses of antibiotics in the past 6 weeks!). I also have dry eyes and itchy scalp and I'm sure many more things that I can't think of right now as I have a muddled head!

Anyway the upshot is after 4 lots of blood tests, mega vitaminD supplements as I don't have any in my body and many visits to my GP I finally got a nhs referral to rheumatology..only its in 6 months time...so I'm going to get private medical treatment, as I can't function like this any longer. Sorry for the moan but I feel really low right now.💤💤💤time for another nap now, bye.

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bexxy
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LuckyJC profile image
LuckyJC

Just wanted to say I feel your pain (literally and metaphorically). I did the same - found a good rheumatologist privately then got myself referred to her on the NHS. She gave me an 'emergency' steroid shot at first private appointment which got me feeling functional enough to cope until my NHS appointment came around. She has been an absolute lifesaver

bexxy profile image
bexxy

Hi, thanks for the reply, I've been taking them since mid December, but now the strength has been increased to 20000iu, and I will be having a blood test in 3 weeks time to see if these ones have had any effect, as my 2 previous blood tests were 'woeful' vitD according to my GP. Also forgot to really introduce myself as I just seem focus on my symptoms and I have to remember that the real me is still there under all these layers of pain, nausea and fatigue. I am 44 years old and a mum to 2 lovely children, I work part-time at a local school but I have been on sick leave since beginning of December, I had previously been off work with suspected pleurisy in October, the chest pain never seemed to go away and I went downhill again from the end of November. Anyway I just try to keep saying to myself that there will be some light at the end of the tunnel when I get a diagnosis and hopefully some treatment. My GP thinks I have connective tissue disease, but won't prescriber anything until I've seen rheumytologists, as he thinks I need immunesuppresents.

bexxy profile image
bexxy

Hi, firstly I was put on 800iu daily for 4Weeks, now I take 20000iu tablet 3 times a week, so it sounds like I'm on the same dosage as yourself, fingers crossed it might show up in my next round of blood tests, I will be on thes tablets for 8 to 12 weeks it says on the prescription.

bexxy profile image
bexxy

Thanks for the message, really I couldn't wait for 6 months for Rheumy, I have been very unwell since October, and finding it hard to function. I would probably have lost my job before I got any treatment and there is no way that I can return to work as I feel now. I feel physically and emotionally drained, but taking the decision to get more prompt consultation has made me feel a little more positive, it's like taking over some of the direction in my treatment, rather than just waiting and waiting, with an extra layer of wait and see approach!

LuckyJC profile image
LuckyJC in reply tobexxy

Definitely agree - the ability to take some small amount of control back makes a huge difference x

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