Diagnosis at last but feeling scared 🙁

[Jo1974manchester]

Hi, I’m jo, 44 yr old single mum finally diagnosed 2 weeks ago with lupus, fibromyalgia and Sjögrens after almost 5 years, 2 GP surgeries and a second opinion from a great rheumatology team. It’s been a tough battle, not just with physical problems, pain, chronic fatigue and depression but psychologically draining being made to feel like I was a whinging hypochondriac who left many many GP visits in floods of tears being told my pain was in my head, you have fibromyalgia, just need to exercise, gain back some confidence and do my best to manage my pain. I knew there was something more and after joining this group 12 months ago, although I’ve felt like i shouldn’t post anything as I didn’t have a diagnosis you have all given me the strength to follow my instinct and persevere to get a 2nd opinion which is exactly what I did and found dr Parker at the Manchester kelgren centre. Not only did dr Parker make me feel like my symptoms were real he also gave me positivity to look forward to having some kind of future when I felt like throwing the towel in!

I started medication immediately and two weeks on for the first time in years I’ve been able to walk up the stairs without crawling....a small step but wow what a difference it has had to my home and work life!

I know this is only the start of my journey and I’m sure there will be lots of ups and downs to come, I am trying to stay positive and hold my head high knowing I’m not crazy.

I do have one question today if anyone can offer any advice....I had my eyes examined on Saturday and found that I have a pale retina with considerable vision loss in my left eye. In particular my periferral vision. The optician explained this was due to inflammation of my nerves from the lupus. This has really scared me and wonder if anyone can offer advice? Like I say im a single mum to a 19 yr old autistic daughter who suffers with borderline personality disorder. We rely on my income solely and the fear of losing my job (which I have only just managed to cling onto during the last 2 years) due to vision problems scares the life out of me!

Sorry for the long post...and thanks again for all your informative posts and stories over the last 12 months, you’ve really helped me get where I am right now! Jo xxx

[Hidden]

Hi there. What a rollercoaster ride you’ve had and are still having really. You must be one tough person to have come through it to achieve this trio of diagnoses. I particularly admire your perseverance with having your daughter to support as main bread winner. That’s big stuff, having to work and support someone you love with these problems.

I’ve not heard of the inflammation causing this kind of retinal issue and vision loss - although I do know that RA can be associated with inflammatory eye disease - but this sounds rather different to me. Has your optician referred you urgently to an ophthalmologist I wonder? I do hope so and also hope that you will ask for the details of this finding from your optician in letter form so that you can copy in your rheumatologist and GP. I think this is probably the most important bit of advice I can offer if you haven’t already got it covered.

Let us hope that now you finally have a proper diagnosis and treatment - the anti inflammatory properties of your new meds will reverse the problems in your eye and help ensure that you go from strength to strength. X

[Jo1974manchester in reply to Hidden]

Hi there Twitchytoes, thank you for your support! Like I said, if it wasn’t for this group I don’t think I would have had the confidence to ask for a second opinion and would still have been stuck in a really dark place. Who knew a mere mortal could question an experts opinion? 😏. But so glad I did! I know my new found legs are probably just due to the steroids and I have been warned I can’t stay on them forever but I’m so grateful to even just have a period of relief. My friends thought I’d lost the plot when I rang them crying telling them how I had been able to walk unaided bare footed to make myself a cuppa this weekend!!! Such a small victory but felt amazing to me!

With regards to my eye issues the optician advised me to speak to rheumy so I’ve left a message on the advice line this morning asking for a call back. She hasn’t referred me on nor has she given me anything in writing which I think from your advice I’ll have to go back and ask for.

I’ve done a little of my own research but think I’m worrying myself more by doing that. It seems optic atrophy can be caused by a number of underlying problems, one of which is autoimmune / systemic diseases which I guess fits. Hopefully the kelgren centre will get back to me this week with some further advice. Thanks again for your message and kind words. It’s so difficult trying to explain to work colleagues and bosses how this effects our lives, you guys get it! You walk in the same shoes as I do every day....or should I say ‘shuffle’....many gentle hugs, jo xxx

[Hidden in reply to Jo1974manchester]

Well let’s just hope the shuffle turns into a full throttled gait given time. Meanwhile 😊🤗 from me x

[misty14]

Hi jo

Congratulations on achieving your diagnoses after having to battle so hard for recognition!. Your a toughie too because of all you've had to cope with and still are!. You've had some good advice from Twitchy but II can add that lupus can affect the nerves so that's what might be happening to your eye!. It's good you've been put on steroids, what dose?. And advised to contact your Rheumy Dept. Do hope you hear from them. Have you been put on Hydroxy tioo?. Hopefully too your Rheumy has suggested a follow up to see how your doing on the treatment?. Glad the steroids have started their magic already!. They are fast acting and I hope you collect many more improvements!. You 'kl wonder how you've coped!. X

[Jo1974manchester in reply to misty14]

Thanks for your message misty14, I'm currently on 10mg of prednisolone and 400mg hydroxy but have been advised to start reducing the prednisolone by half a tablet over the next 6 weeks until eventually stopping I know the doctor told me they were good....but i didn't think they would be THIS good! i don't know how i'll cope having to stop with little pill of magic!it has literally given me a life back, maybe not the one i had years ago but one that at least allows me to get up and get in work x

[misty14 in reply to Jo1974manchester]

Hi jo

It's good you can reduce so slowly. That's how I do mine and each time you reduce you'll see what symptoms return and be able to tell your Rheumy. They really are life enhancing pills for us . It's such a shame that they have horrid side effects but if managed well, don't have to be a big problem. You were put on a lowish dose which is good. I've been on them for years. I hope with Hydroxy you were told about the annual eye check. Was that what you were doing?. Good luck with the reductions , keep us posted how you get on. X

[Jo1974manchester in reply to misty14]

Hi Misty, yes, I was due an eye test anyway so Dr Parker advised to get it done asap so they could monitor any changes with taking the meds going forward.

Thanks again and I will be sure to update with any news! xxx

[whisperit]

Hello jo,

True grit. You sound like an amazing mum. Well done on battling through and finally getting some of the clarity and support you need. I'm sure you will have seen the Lupus UK info on the eye in lupus here lupusuk.org.uk/medical/gp-g... Keep pestering the rheumy for a specialist referral, and wear your scars with pride. x

[Jo1974manchester in reply to whisperit]

Thanks whisperit, i hadn't seen that, i'll take a look. Thanks for your lovely words, you are all so supportive on here. I hope one day I too can help someone like you guys have helped me. You are all such strong people.....inspiring! xxx

[weathervane]

I agree with whisperit , you need a urgent referral to an eye specialist . Best wishes xx