I need a shrink???

[Loopy-Claire]

Hi all, Im feeling so lost, spent a week in hospital having soo many tests to find almost nothing! My shoulder pain is from Bursitis..cannot tell me what my other joint pains are from. Went to watch my son Jetski race and my eyes felt like I had been punched, my elbows and fingers would not function..but there is nothing wrong with me?? Can all these pains be in my head? My friend of over 35 years has said I need a shrink as no tests showing anything really wrong, and as I have major things going on in my life...moving to Australia etc..it must be in my head!! I was on prednisone which dried my mouth so horribly, I was having paranoia which after I googled this was a side effect so I stopped. There was no improvement at all while on those pills so I just stopped. I have tried thinking positive, telling myself there is NOTHING wrong, yet I still have this pain....where to from here?

[Paul_Howard Partner LUPUS UK]

HI Loopy-Claire ,

I'm sorry to hear that you are struggling to get a satisfactory diagnosis for your symptoms. Have you been investigated for lupus and had an antinuclear antibody (ANA) and anti-dsDNA blood test?

It is unfortunately very common for people with conditions like lupus to experience difficulty getting a diagnosis and you may face some people and medical professionals who may doubt your symptoms along the way, but ultimately you know your body best.

It is unusual for steroids to not have any sort of improvement on lupus, but it is not unheard of. It may make lupus less likely to be the cause of your symptoms, but it is not ruled out yet.

Have you had a referral to a rheumatologist yet?

[Loopy-Claire in reply to Paul_Howard]

Hello Paul,

Yes, went to rheumatologist follow up appointment today...more confused than ever!

Dermatologist said I have start of lupus, but wont put it in writing..asked rheumy and she said I dont have and she has also asked for report..what the hell!!!

Anyway, I am now on Methotrxate, folic acid, serquel, prednisone and plasmoquine...and ecotrin to avoid DVT when flying. To be honest, I did try to concentrate when doc was telling me what the "shopping basket" of pills were for and tonight I have forgotten. I sent list to same friend who thinks I need a shrink and reply was rather sympathetic, I will be rattling around in a moronic state due to serquel! Oh hell, not even going to google these, just take as prescribed and see what happens! Soooo over this.

Back on prednisone but only 1 daily..lets see....

Anything is better than the pain.

Thank goodness for this group, we all in the same nest, and its so pleasing to know (not in a sadistic horrible way!!!) that we all going through similar poo and can relate to each other.

I love the humour some people have, a ray of sunshine to a gloomy day...AND I live in AFRICA so I should not be gloomy. Soon I will have my old self back and be able to laugh off this rubbish.

I cannot take this nonsense to Australia with me, I will be booted out soooo fast!

Well, to all who read this, take care, smile even if the sun aint smiling, sing even if there is no music and dance with a broom.

xxxxx

[Paul_Howard Partner LUPUS UK in reply to Loopy-Claire]

Hi Loopy-Claire ,

I'm sorry to hear that there is some confusion about your diagnosis. If your rheumatologist believes that you don't have lupus, have they suggested what may be the cause of your symptoms?

It can be difficult to digest all the information in a doctor's appointment. It can sometimes be helpful to take a family member or friend with you to help remember everything that is said, or make notes during the appointment. We have an article about getting the most from your doctor's appointments which has more helpful tips - lupusuk.org.uk/getting-the-...

Could you write/email your consultant to ask them to explain what your various medications are for?

[Loopy-Claire in reply to Paul_Howard]

Thank you Paul, very good idea! Will do just that.