Lupus patient

[alisoncrowther]

Hi I'm new to this site I live in Halifax and just wondering if anyone in Halifax has been diagnosed with lupus and also needs to talk about things seen as though we are all in the same position

[alisoncrowther]

Thank you for letting me join this site

[whisperit in reply to alisoncrowther]

Hello and welcome alisoncrowther! x

[alisoncrowther in reply to whisperit]

Hello and thank for letting me join the site I was diagnosed with lupus in march 2016 after a long battle with test s I feel as this took a long time to diagnose because I'd been poorly for 18 months before this I had been going to the doctor for months and I just couldn't put my finger on what was wrong I suffer from malaise everyday constant pain in my back wrists and arms I actually thought I was going mad because none of the doctors knew why I was feeling so bad they sent me to a rheumatologist and she finally diagnosed mixed connective tissue disease and lupus I am currently taking hydoxchloquine which I have been on for the last six months with no positive effect still feel the same as before I started taking them I wonder if anyone has experienced the same with the tablet ?

[Prima2008 in reply to alisoncrowther]

Hie

Iam sorry you are going through this phase at the moment

Based on my experience having been diagnosed with mtcd in Nov 2016, I must say it took me almost a 8 months before I could start seeing the benefits of hydroxychloroquine. I almost gave up !!!

What I can advise you is to try persevere But if u not seeing the result request a review with your physician. They say that it takes 6 months plus before u start seeing any changes with hydroxy treatment But that maybe different for others . if it helps ask your physician to give u Some painkillers which help with joint pain

I have found not drinking coffee and not eating fried foods and having a good night sleep helpful

soaking yourself in hot bath helps with pain and stiffness .

[Myncare]

Good morning, I am a carer of Lupus child. This forum is very hepful. I am from Leeds and will be happy to chat about my experience.

[alisoncrowther in reply to Myncare]

Good morning I'm sorry your child has lupus that must be horrendous for them bless em its a horrible disease I know how I feel some days it must be 100 times worse for a child ❤️

[Lupiknits]

Welcome from sunny Leeds! When I started taking hydroxy I was counting down to what I thought was the magical 6 month point, because the rheumy said 3 to 6 months. I felt that there was no difference. After taking it for over a year I stopped. Bad idea! They were helping and I started again. I can't say the hydroxy has made a huge difference for me, but there again I thought it would bring me back to "normal". I'm definitely better for taking it though.

[alisoncrowther in reply to Lupiknits]

Thank you for the advice I have been taking mine for six month and no effect I have had a steroid injection which only lasted for around three days I have a appointment on the 19 of October to see the consultant but I need to see her early but unfortunately no appointment s it's a joke I have to keep going sick at work which puts financial pressure on because I don't get paid I'm quite knew to this condition but god does it hit hard I find myself getting upset and do end up in bed for days my life has changed so much it's so hard for people to understand because they can't see it they think you are ok but I'm glad I've found this website I realise now I'm not on my own x

[Lupiknits]

You aren't on your own at all! Can your GP get you an expedited appointment? Mine did at one time. The hospital appointments system was chaotic, but it happened x

[alisoncrowther in reply to Lupiknits]

When I go to my doctor they just say it's a rheumatologist specialists that need to deal with it so they just give me painkillers unfortunately I can't take most of them because they make me feel as though I'm on a different planet which is not a good combination when you also suffer with mind fog

[Prima2008 in reply to alisoncrowther]

I can relate too that a lot and makes me ambivalent to even think about going to the GP for a review but keep polishing to get them to give you something that works and if not ring the rheumatology for a telephone consult

That way they can't dismiss you

I hope you feel better x

[Lupiknits]

I know about GPs doing that, it took me changing to a new practice for a GP to say he didn't know enough to feel confident in helping to get an expedited appointment.

My pain is relieved by BuTrans patches. Fortunately they don't make me foggy. I think. Well, not all the time anyway.

[alisoncrowther in reply to Lupiknits]

That's good I have never heard of them I may have try them are the just like anti smoke patches ? X

[Lupiknits in reply to alisoncrowther]

Yes they are like the smoking patches, but seem far more hypo allergenic. It was at the point when I was waking up in severe pain that my GP switched me from co-codamol to BuTrans. I put a patch on every 7 days and they work 24/7. No more watching the clock for four hours to pass. I can't take NSAIDs and gabapentin just made me hallucinate. If you are prescribed the BuTrans, they start you with the smallest patch to see if you can tolerate it, then increase the dose until it does the trick.

[alisoncrowther]

I do not have any rash it's just severe back pain arm s and fingers and a feeling of being unwell everyday would this still work ? X

[alisoncrowther in reply to alisoncrowther]

My job doesn't help either I'm a support worker which involves working with mental health patients I do a lot of hoisting and rolling as well as personal cares sometimes it's a little to much being in constant pain but really struggling sometimes to go to work having to keep going sick because of feeling unwell and the tablets don't seem to be working x

[Prima2008 in reply to alisoncrowther]

Hie

I work in a similar setting and it's a nightmare for people to understand that you can wake up feeling energetic and pain free and in some days u can't even crawl out of bed And in some days u could be fatigued n these flatcuatiins are beyond your control .

You shouldn't really be moving and roiling anything as such .It will make you feel tired later and possible bring on a flare.that had been my problem . I overdo when I am well n later in suffer . Try to pace yourself and do little but often and let them know you are limited in what you can do

My fight is for people to know that my illness is real and not invisible and do not want to be made to feel invisible. Thus far it's very hard to do but am preservering

hope you will feel better

Take good care of yourself because if u don't no one will x