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Discussion Starter · #1 ·
For the last 10 years I've struggled with various symptoms that have been brushed off as stress many times. In the last 6 months they have gotten worse and my gp is investigating but I am wondering if I'm just going mad. I just dont know if I should pursue it or not...
All bloods fine except positive antibody test.
Everything aches muscles and joints, wide spread pain
Frequent UTI s
Sun stroke very easily
Malar rash once when ill and faded in few days
Frequent headaches
Fatigue - Sleep/rest doesnt seem to help or improve things.
Raynards
Titinus
Stomach issues/frequent wind and some pain.

There are a few other things that come and go as well. I'm waiting on a rheumatologist referral but I'm worried I'm wasting their time as my bloods are mainly okay. Do I pursue it or just leave it and see how I go?

Thank you
 

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Hi.... you are not going mad. My bloods were always pretty good apart from a few markers that the Consultant didn't really test for early enough and indeed then preferred to watch and wait and leave me untreated, until I fully collapsed and ended up in hospital for a week and was diagnosed with MCTD, I too had raynauds etc.

Keep a diary of events, so pain score from 0-10 every day noting where the pain is and how it is manifesting. Note down what that is stopping you from doing ie lifting arms above head to reach for something in a cupboard, Take photos of anything visible, swelling, discolouration, ulcers, rashes etc etc. Note the weather each day too.

This can all help build up a picture for the Rheumy who only sees you for a short time. Trust yourself, you know your own body............ I hope the appointment goes well. Be honest, don't wear make up/nail varnish etc and don't be brave...tell it how it is in the worst moments....I wish you well............Claire
 

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Discussion Starter · #3 ·
Hi,
Thank you so much for replying! I have been keeping a record of things but only been using 1 to 5 scale so far - I will tweak it :).
I suspect it will be months and months before I get an appointment but it is reassuring to know that other people have had fairly normal bloods. It is so hard to know when it is your normal every day to feel rubbish!

Thank you again.
 

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Welcome,

A second opinion never hurts and Rheumatologists deal with these type of symptoms all the time. Their problem is getting enough information from you to be able to form a picture of what is going on, whether it be Lupus or possibly another autoimmune disease. Since this has been going on for so long and symptoms come and go you may want to ask a family member to help you make up a list of things.

Don't expect a diagnosis right away. The doctor will most likely run more tests and like with Claire many times they take a wait and see approach to monitor your symptoms. Certain criteria need to be met for a diagnosis. The latest criteria came out in 2019 and isn't in an easy form to post as yet due to the many explanations about changes made but several articles can be found on line if you are interested.

I hope your appointment doesn't take long to get.

Take care,
Lazylegs
 

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Hello Bearbear,

Lazylegs and Claire have already given you excellent advice, it's certainly all about giving the Rheumy the best picture of what's going on for you in the appointment. I gave the Rheumy a copy of my notes and the rating scale so he had something to compare with at my next appointment.

I wonder if you plan to or if you're able to take someone with you to the appointment? I've done this and it's been really helpful when I've got tongue tied or brain fog had struck and they've been able to speak up for me.

I hope you get an appointment soon.
Take care,
Jess.
 
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