I’m new here with very recent diagnosis

[Cottar]

Had a diagnosis of lupus and Sjögren’s syndrome a few days ago which gives an explanation for a whole load of symptoms. It’s really good to have a diagnosis after all these years but now I have to deal with the idea that this is something I’m going to have to live with from now on. At least I know now not to keep pushing through the fatigue, I’m not lazy which is what I was thinking, and also it isn’t angina which I have been having investigations for.

How do you manage your pain and fatigue, any ideas? And are there any tips for making sure this doesn’t get any worse?

[PMRpro]

You might find this set of links useful:

healthunlocked.com/pmrgcauk......

They are at least entertaining (well, I think so anyway!!)

[Cottar in reply to PMRpro]

Thanks.

[Hidden]

Beautiful photo!

It’s always really conflicting getting these kind of diagnoses I know. But on the plus side there are ways to manage fatigue and pain better now you know what you’re up against.

I get fatigue management from an occupational therapist who is Rheumatology trained in my hospital and I have learned a lot from him. I also am about to have my first ever pain management consultation so will post once I’ve had this next week. Physiotherapy is great too.

I have found it really helps to ask for referrals or advice on how to access these health professionals when you are at Rheumatology clinic or through joining local groups for Lupus UK or the British Sjögren’s Syndrome Association.

[Cottar in reply to Hidden]

Thanks for your reply, glad you like the photo.

It’ll be three months till I’m back at the rheumatology clinic, I’ll have to ask about these health professionals.

There are no groups local to where I live so I’ll keep in touch with people online. Cheers.

[Hidden in reply to Cottar]

Sounds like a plan😊. It’s also a really idea to read up about managing fatigue and pain on the Lupus UK site here and BSSA site too.

[Cottar in reply to Hidden]

I’ll keep reading and checking out other sites. I’ll have to pace myself but I’m making a start. Thanks for the support 👍

[Hidden in reply to Cottar]

Meanwhile this is a good link: info.sjogrens.org/conquerin...

[Cottar in reply to Hidden]

Just had chance to read it. The thought that this illness is like never ending flu really made sense to me. Might help me explain things to friends and relatives too. You’ve given me lots of good ideas for reading up on Lupus and Sjögren, thanks. I’ll have to pace myself, it’s a lot to take in.

[Hidden in reply to Cottar]

It a lot to take in so go very gently on yourself please! X

[Cottar in reply to Hidden]

Good advice 😁

[Jmcb123]

Hello there, I am also newly diagnosed and was a bit overwhelmed at first but now getting to grips with it all. I have found exercise has helped me... I don’t always feel like I want to do it but definitely feel physically and mentally better afterwards. Also taking turmeric, apple cider vinegar and aloe Vera drinking gel has improved my energy levels and pain. Positive mental attitude too, which is very difficult when you feel like crap! Can I ask what age you are and if they’ve put you on medication at all? X

[Cottar]

I’m in my late 60s but looking back I think that I must have been affected by this for going on 40 years. It would explain my fatigue and pain and so much else . I’ve been prescribed hydroxychloroquine and have been told that it will take between 6 and 12 weeks to have an effect so I’ll just wait and see. Haven’t noticed any side effects so that’s good.

I’ll follow your advice for the exercise, already use apple cider vinegar and will start using more turmeric in cooking but not sure about the Aloe Vera drink, I’ll give it a try. Glad to hear these things are helping you, thanks for sharing your ideas.

[KeepingUpBeat]

Hi there I've been told hydroxychloroquine takes six months before you really feel the benefits. Apple Cider vinegar 'Braggs Mother Tongue' and turmeric provide very good natural pain relief. If you can motivate yourself to exercise perhaps one class a week of pilates or yoga going at your own pace (instructors will tell you think about your body and what you can manage not what others may be doing), you will feel energised after the class. I find that once home I need to have a nap before I do anything else but the 'feel good' remains when I get up.

[Cottar in reply to KeepingUpBeat]

Thanks for your suggestions, I’m trying to keep upbeat 😁

[Paul_Howard Partner LUPUS UK]

Hi Cottar ,

Welcome to the LUPUS UK Community Forum. I hope that you will find this a helpful source of information and support.

Have you started on any medications following your diagnosis?

We have a couple of articles on our website which may be of interest to you. One is about managing fatigue and one is about pain management;

lupusuk.org.uk/managing-fat...

lupusuk.org.uk/pain-managem...

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

[Cottar in reply to Paul_Howard]

Thanks for the welcome and the links. I’ve downloaded them and will read them a bit at a time. There’s so much to take in at the moment that it’s all becoming a bit overwhelming but I’m sure I’ll settle down with it all soon. It’s good to have a forum like this to talk things over with people who ‘get it’.