New to auto immune and a bit in awe of everyone's stories.

[Circles]

Misscarraiges ×3 in my twenties now fifty three. Rashes on and off for years.unbelievable fatigue on and off. Felt really sick for last six years started going to docs last two years. So far have chronic pancreatitis Raynaud's and resting tachycardia. All sjogrens dryness joint pain rashes worse in sun and feet ballooned last week on hols swelling nearly gone now but feet feel sore. On plaqeunil 200 mg and adalat 30mg and feel a lot better than before but seems all the tierdness and weird aches are back maybe from the sun.sorry for such a long post can anyone relate. Rehumy mentioned maybe lupus syndrome. A little puzzed next visit November.

[Barnclown]

glad you're here circles, and that you're telling us a bit about yourself. am sure you'll get some good replies.

and i can relate very much to the symptoms you're describing. when i first formally entered the diagnosis & treatment process just over 4 years ago, i was feeling pretty much the way you tell us you're feeling.

hang in there: this sounds like a good beginning. you've got your consultant's attention. lupus is in the frame. gradually, you and your consultants & drs will understand more about your version of this kind of immune system dysfunction, and what treatment plan can help you most. in the meantime, keep a few notes of how things are going, how your meds do or don't seem to be helping etc + take photos of any symptoms that may have faded by the time you see your drs again. and while you're waiting for the nov appt, please try not to hesitate to contact your gp and rheumatology clinic if you're feeling concerned about something that's happening to you. Nov may seem a long way off, but by then you'll have a clearer sense of how hydroxy is helping (or not)

take care xo

[Circles in reply to Barnclown]

Thank you so much for your reply. Feel so happy to have somewhere to talk and ask questions if I need to.

[littleeffie]

Hi and sorry to hear about the miscarriages ,I had eleven over the years,I dont think people realise the real effect they have.

Unfortunately a lot of the immune illnesses like sjogrens ,Lupus etc can give years of changing symptoms which can be hard to get recognised and diagnosed.The alternative way of thinking about Lupus is its a bit like having a horrible neighbour.If your lucky they will stick their head over the fence and be obviously horrible for all to see and more easily dealt with whereas most of the time it's like having one who constantly gives you grief hidden behind the fence changing the ways they upset you for years before someone looks for and sees them or they finally get in your face.Difficult for you and difficult for doctors/consultant so the best thing is to keep a diary of symptoms with photos if possible as this makes it easier for tests and diagnosis .

Hope they sort out some help for you soon and here to help if you do get a diagnosis of Lupus.Oh and try and keep a sense of humour as it really helps on those tough days.

Kind thoughts

Effie

[Circles in reply to littleeffie]

Thank you so much great way of explaining it lol.Thought I lost my sense of humour I felt so rotten for ages but since starting medication feel its back have a great hubby and we laugh alot most of the time.Will wait and see what happens next app.also learned I have great patience never knew I had that.lol xo

[jacqueline121]

Welcome circles, sorry you've been through so much. I hope they find out what is causing the problems. The fatigue is terrible. I had two normal days this week and it was great. Then I totally crashed and slept most of yesterday.

Try to pace yourself. Listen to your body and rest when you can, avoid stress as much as possible too.

I hope you get a diagnosis and the right medication soon. It's a tough disease to live with but great you have a supportive husband. It makes all the difference.

Take care and keep us updated.

[Circles in reply to jacqueline121]

Thank you for your kind reply.Do a lot of resting on weekends as I work full time Monday to Friday. Have a bit more energy on plaqeunil but still feel worn out at times. Think work and hubby have kept me sane. Talking to people like yourself and others who have replied has helped already. You are all so kind I really appreciate it.

[Paul_Howard Partner LUPUS UK]

Hi Circles,

I'm glad to hear that your treatment has you feeling a lot better, though you are still experiencing some symptoms. It's worth taking precautions against the sun in case it is causing these symptoms. If it turns out that it isn't then you can discuss it with your consultant and see if your current treatment regimen is sufficient for you.

If you require any more information about lupus, I would be happy to send you one of our free information packs. Just send me a private message or email [e-mail] with your name and address.

[Circles in reply to Paul_Howard]

Thanks Paul sent you my details.