So hello everyone, on Monday I had my 2nd rheumatologist appointment I was really nervous me and mum went and I have been fully diagnosed with, lupus, rheumatoid arthritis, chronic connective tissue disease, raynauds, polysistic ovaries and plantiifacitus sorry about the spelling, so my heads abit of a mess atm It will take abit of time to get it all in, I had an ECG and a chest X-Ray and I’m waiting for a heart echo and to see a podiatry, so they have put me on some strong steroids to try help and some other tablets called hydroxychloroquine and I have to go back in 2month, I can’t be anywhere near the sun and they have told me I might start loosing my hair which it’s been thinning anyway and bits have been falling out and I went to the doctors yesterday and they helped and filled my pip form out with me so that’s sent off and now waiting to see what happened I’m in so much pain all the time x
Results from my Rheumatologist appointment - LUPUS UK
You poor old thing, thats a full menu you have there.
I can share hydroxy experience with you as I take it myself. I'm diagnosed with mild SLE and have been taking it since 2005. I was losing my hair as well as lots of other symptoms but hydroxy has been a godsend. Although my hairs still a bit thin on top its stopped falling out and the other symtoms of tiredness, sweats, joint pain and muscle fatigue have eased...not gone away altogether but they're under control which is what hydroxy does for the disease.
I have sjogrens, managing that is a daily business and raynauds which again has improved with hydroxy. I'm not a sunbather as I burn easily and need tinted glasses courtesy of the NHS. Its been a process of acceptance and learning how to manage it all. I'm glad you have your mum to give some much needed support and hope you see some improvement xxx
Thankyou so much, I have always been poorly from been really little and everything has been diagnosed got too much wrong with me for a 19yr old girl, I’m constant fatigue, joint pains all over my body I struggle to walk all the time, I can’t even bath my self or dress myself or anything anymore my mum has to help me, my mum is gonna try see if she can get carers allowance as she has to help me all the time I can’t do things on my own she sometimes has to feed me aswell as I have no energy and my hands constantly hurt and I’m just fatigue all the time x
If your mum is assisting with bathing, dressing and getting you up, doing your meals? etc she should get a carers allowance and the sooner the better. I'm pretty sure she'll be entitled to one get those forms filled in and sent off
Yeah, she works but then when she’s home she like works again because she has to care for me and doing everything for me as I can’t walk properly or do anything for my self, where do you get the forms from, but she also said she might have to stop her job to care for me 24/7 xxx
Okay Thank you x