Newbie, awaiting rheumatology and urology...

[Vixen77]

Hi Folks!

I’ve been following this forum for a few weeks now after it was suggested that I may have lupus and/or some other related autoimmune disease.

For some years now, I’ve been struggling with increasing fatigue and muscle pains. I’ve also been prone to kidney infections and UTI’s and was diagnosed with hypothyroidism after the birth of my daughter in 2006...although my thyroid levels mysteriously returned to normal (I was naughty and stopped taking my meds) in 2012. A recent test has showed I’m “mildly” hypo again though. I have also had pleurisy on a twice yearly basis since 2015.

Last year, things really escalated. I was exhausted. I put it down to combining single parenthood (5 kids) and my nursing career and just fobbed everything off. By Xmas I was suffering repeat UTI’s and another episode of pleurisy. In January I became so poorly that I couldn’t walk to the toilet without becoming so short of breath that I would shake. GP suspected an exacerbation of asthma and pleurisy and started inhalers which did nothing and two days later I was rushed to hospital on oxygen, with suspected PE. An embolism was thankfully ruled out...but they had no idea why I had developed such shortness of breath as I was previously fine. They said it wasn’t typical asthma as I wasn’t wheezing. I was sent home with steroids and no idea what was wrong with me. The steroids worked though and I was fine a few weeks later.

After my steroids stopped, I came down with another kidney infection which didn’t respond to antibiotics...and the muscle pains and fatigue kicked off with a vengeance. More infections followed and I ended up off sick in June as the hot weather was unbearable. GP diagnosed fibromyalgia at this point and did routine bloods which showed raised inflammatory markers and my thyroid off kilter.

Since then I’ve gradually felt worse, despite trying to remain positive and strong. My gums randomly bleed heavily and I’m currently in bed with another bout of pleurisy and breathing problems. Out of desperation a few weeks back, I wrote all of my random symptoms down and went back to my GP...she took one look at it all and said lupus was a possibility...although it could be many other things. She’s referred me to rheumatology and urology due to the repeat UTI symptoms...this bout of pleurisy has arrived since that appointment and I know I need to go back but they must be sick of the sight of me.

Anyway...not sure what I’m expecting from telling you all this as I know this is just the start of a journey that could lead anywhere, but it feels so good to get it off my chest (ha). I know there is something going horribly wrong with my body, especially over the past couple of years. I didn’t want to be fobbed off with fibromyalgia.

Thanks for reading my post...I’m just so fed up with myself x

[Paul_Howard Partner LUPUS UK]

Hi Vixen77 ,

Welcome to the LUPUS UK Community Forum and thank you for sharing your experiences. I hope that you find this a helpful place for support and information.

Do you have an appointment date for rheumatology yet? If you'd like any tips on preparing for the consultation, please take a look at our article here - lupusuk.org.uk/getting-the-...

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

Please keep us updated with how you are getting on.

[Vixen77 in reply to Paul_Howard]

Thankyou Paul. I’m awaiting my appointment, but due back to see my GP this morning with current chest issues, so will chase it up.

Shall read those links, Thankyou

[kingsnorth]

Welcomr Vixen l have had lupus and sjogrens for 15 years possibly longer. I have found that once you have one autoimmune disease others follow. In February l was diagnosed with PBC which is also autoimmune. Hopefully your rheumatologist will get to the bottom of it and put you on the right medication. Best wishes

[Vixen77 in reply to kingsnorth]

Thankyou. Fingers crossed. Sorry you have had additional problems diagnosed. Xx

[Angela1963]

So sorry to hear you have been so unwell and hope you find some answers soon . Why ‘fobbed off’ with fibro ? It a seriously debitating disease with very similar symptoms (apart from raised inflammatory markers) as a sufferer of fibro (any many other illness) I should know .

[Vixen77 in reply to Angela1963]

Hi Angela,

When I say “fobbed off”, I meant that I felt as though I hadn’t been really listened to and my history considered. My mum and 19 year old daughter both have fibromyalgia and it felt as though he just assumed that was it...nothing I could do about it...we’ll put you on a waiting list to see a counsellor. I wasn’t referred to rheumatology for an accurate diagnosis like my mum and daughter...just assumed that my symptoms must be that due to family history.

I knew in my heart that my extensive history didn’t just point to fibro and that there was something else wrong.

I’m not dismissing his diagnosis either...although I think I would accept it more from a rheumatologist who had explored other options. I’m more than aware of how debilliatating and awful fibro is to live with

Interestingly, before being diagnosed with fibromyalgia, my Mum underwent years of tests. Lupus was highly suspected...it was her rheumatologist who eventually told her that she was complicated as her symptoms didn’t specifically fit one type of auto-immune disease, but were a combination. Fibromyalgia was diagnosed on top of that...lupus was never formally diagnosed although she was told she had several symptoms. This must have been around 15 years ago now and she’s not been seen by rheumatology since. She’s since been diagnosed with underactive thyroid, pernicious anaemia, RA, diabetes (type 1) and colitis, which almost killed her. Yet the effects of fibro continue to be the most debilitating.

My daughter was 14 when she collapsed at school and lost the feeling in her legs. We went through three years of being passed to different specialists, all suspecting MS, before a rheumatologist diagnosed fibromyalgia.

The only common factor the three of us share are heavy bleeding, fatigue and joint pains. It’s so frustrating. Xx

[Vixen77]

Update: Went back to GP yesterday as struggling to breathe and left side of chest painful. She confirmed pleurisy (again, yay!) and put me on Prednisolone.

This morning, the pleurisy was joined by the ever wonderful UTI just to add to the misery. GP won’t give me any more antibiotics as they don’t do anything so I’m now guzzling water. The saga continues 🙄

[Wolf1]

Hi

I have lupus, fibromyalgia and mixed connective tissue disease. Your symptoms definitely sound like any or all those diseases. My lupus has damaged my lungs. I have shrinking lung disease and fibrosis of both lungs. I too obviously get very short of breath. You need to go to specialist Centre. I see Prof Cruz and team at Guys & St Thomas’s. They are fantastic. Xx

[Vixen77 in reply to Wolf1]

Hi Wolf,

I will certainly look into a specialist referral if I don’t get any joy with this one. I’m a bit confused about the difference between lupus and MCTD? I though MCTD was diagnosed when symptoms didn’t quite fit lupus? Please excuse my ignorance...this is all a learning curve right now and I’m trying to get my head around all the different terms and labels xx

[Wolf1 in reply to Vixen77]

Bloods tests can diagnose lupus, plus I had skin biopsy too. But it’s quite common to unfortunately have over lapping autoimmune diseases too. Xx