Newly diagnosed with Lupus two weeks before Christmas 2016

I am so upset, I have a wonderful Rheumatologist she is helping me all she can also my local medical practice Drs. The pharmacist I pick my prescription s up from put me on to this site. So why do I feel so alone and scared I work fulltime and when I developed Rheuamatoid Arthritis I worried about my ability to work and there ability to support me, now with the Lupus that's not just doubled my worry it's quadrupled it.

I think I may be having a flare up but I don't know enough about Lupus to tell. My symptoms are: swollen joints, pain to a factor of 10, dry mouth nothing works, no sleep, dropping things, violent twitches in my sleep and awake, lack of stamina to walk without being out of breath and also forgetfulness

7 Replies

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  • I'm still waiting for my diagnosis 6 year's of battling with pain now I struggle to walk, I have been made to feel a nut job for mentioned it to my doctor, and I'm getting worse, I have no real idea what lupus is or how you get it,

  • I replied to your initial post sara10kids.

  • Hi have you had any blood tests from gp ? I am 'borderline lupus' which means I had a positive ANA test. I have joint pain and eyebrowhairloss. I need to meet 4 of 11 criteria for a definite diagnosis.

    I wonder if your GP won't test you would it be possible for you to pay for the test privately ? I'm not sure of the cost but think it's not too expensive. I would also consider changing gp. The one I seen first laughed it off and asked what I'd been reading when I said I felt like my joints were under attack. Luckily the one I seen next took me seriously. Good luck.

  • Sorry you are feeling this way. But this community is excellent for companionship and hopefully you will feel less isolated soon when others join in.

    Having a good rheumy, as you do, is really half the battle. You don't say which medications you are on but some of these can make us low as well. I can't say exactly re pain but is your RA quite active too perhaps? Lupus causes pain in joints too but bilateral pain tends to be RA.

    I was previously diagnosed with RA but am now rediagnosed with primary Sjögren's. This could be overlapping for you as a secondary as you say your mouth is dry and this is one of the main symptoms. Lots of us have overlapping symptoms of other connective tissue diseases.

    There is no very effective treatment for the RA side of Sjögren's but there are effective pain meds and disease modifying treatments for pain and fatigue, such as Hydroxichloraquine- which can take about 12 weeks to work.

    There are also topical treatments for the symptoms of dry mouth and eyes - your GP should be able to help with these. I find Salivex pastels indespespensible. Hope this helps - keep posting - sure others with Lupus will respond soon.

  • So sorry to hear you have been struggling so much. The one thing with Lupus or any other autoamune disease is any stress will make it all so much worse. So try to find something that will support you. Not to sure how you feel about relaxing and alternative therapy but I have found over the years it has so helped me. All the symptoms you have described sound like sjogrens which is another autoimmune disease. Pain can make it all so much worse and it's so exhausting I got referred to my local pain clinic. I now have much less pain.

    Good 😊 luck go talk to your dr they can find ways of helping you come to terms with this. You are never alone here there is always someone who understands how bad it gets. Xx

  • Why not ring one of our Lupus UK contacts for a chat? Best wishes Kevin

  • Hi Babytula,

    You are not alone! It seems you have a lovely support team around you consisting of different healthcare professionals who only want the best for you. Using an online sociable forum such as the LUPUS UK HealthUnlocked Community gives you the opportunity to connect with other people with lupus and relieve the worries you may have by hearing other peoples’ experiences.

    Joint aches and pains as well as inflammation of the joints are all symptoms linked with lupus. People with lupus can also experience ‘dry mouth’ and fatigue. I suggest downloading or requesting our free lupus information pack to find out more: lupusuk.org.uk/request-info...

    If you need more information about lupus and employment, including information about your rights and what support services are available, we have two booklets that you can read and download at lupusuk.org.uk/working-with... If you need physical copies sent to you, please just email me at Chanpreet@lupusuk.org.uk with your name and address.

    Wishing you the best of luck, let us know how you get on.

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