Waiting for diagnosis

I'm 39 and just had my first appointment with a rheumatologist yesterday. She did x rays and ultrasound on my joints and says she does not think it's RA and now doing more blood tests which may indicate lupus I have had a positive ANA along with pretty much every symptom of RA except swollen, red joints, and every symptom of lupus except rash. I was told 5hey expect my bloods to be negative as apparently it can be early on, so will be put on plaquenil if negative blood tests and if positive will add immunosuppressive drugs and who knows what else. I'm tired if being tired and in pain and waiting to find out what the heck is going on. Was told it's definitely auto immune but I don't fit symptoms of really anything else but RA or lupus. Being tested for 'sticky blood' too. Any afvuce/support/pearls of wisdom greatly appreciated.

9 Replies

  • Hello I was finally diagnosed with lupus 3 months ago after 7 years of joint pain, exhaustion, inflammation and generally feeling terrible. I had positive ANA for 2 yrs leading up diagnosis, possibly before but wasn't tested. My pelvis and hips are the worst affected, with my ankles, feet and hands next. It took ages to diagnose me as I don't have any rashes though pretty much every other symptom. I started on Hydroxy/planquenil 10 weeks ago and its helped a lot with the fatigue and muscle pain and inflammation, and my hair is growing back, i'd lost loads. My joints are still very stiff and I now have kidney and liver issues and back to see rheumatologist after xmas to see what happens next. I'm 37 and have 2 young kids. My advice is learn about pacing, read up on chronic pain coping strategies. Every time you see rheumatologist explain all your symptoms even those that don't seem relevant. My diagnosis only came about when I told Doctors that my periods had stopped and that I kept getting mouth ulcers, then suddenly it all clicked into place.

    Wishing you all the best x

  • Thank you so much for this. I had joint pains but was an avid runner and quite athletic so chalked it up to over doing it. I've been knackered for a long time but I am also a single mum of 2 girls (6 and 9) and work full time and just finished a law degree in July. I felt that I could explain those things away but then the pain in my feet persisted and then my hands (possibly the worst part) started hurting and it's gotten worse. Started having lots of hair coming out when running my fingers through it, in the shower and brushing and frequent headaches. I let it all pile up over about 6 months then went to gp as I didn't want to get fobbed off going in on a piece meal basis. Kind of glad I did it that way and gp seems very proactive. Rheumatologist was very guarded and didn't want to give an indication other than its not RA.

    I definitely need to try and pace myself but with work and kids, and I'm already doing nothing in the evening besides making dinner, I don't know where to begin. I feel like crap in general but feeling worse as ive not been active. I don't want to give up running but I don't have the energy right now to do it!

    I am glad to read that plaquenil has helped, the fatigue is awful and the joint pain, I feel like I've run 10 marathons in a day!

    Thanks for your story and kind words x

  • Your story sounds so familiar! I have 2 girls age 5 and 9 and was also a keen runner. I used to run 25km every week but haven't been able to run for 18 months as it hurts too much and i'm too exhausted. I also completed my degree while working full time...and turns out had lupus as well.

    So however awful you feel now, remind yourself every day you ARE an actual real life superwoman!!! You have achieved so much and will do again.

    The fatigue is the worst part, its just so draining, I spent the first 9 months of the year going to bed at the same time as the kids and feeling too awful to leave the house at the weekends. I've found pacing myself during the day really does help, sit down before you cook tea, have a hot drink and just rest. Do one thing at a time, rushing around makes it worse. Stop when you're tired. Its all so much easier said than done, I know!

    I've tried all kinds of diets to help but the only thing i've found helpful is making sure my blood sugar doesn't get low, 'adrenal fatigue' advice on the web has been helpful.

    While you're going through this horrible not knowing phase, try not to beat yourself up about the things you used to be able to do or things you should be able to do now...maybe you're better at this than I am already!! :)

    Take care x

  • hello and welcome!

    It can be a confusing time, with lots of new concepts and uncertainties. My two "pearls of wisdom" would be 1) Try to keep a detailed diary of your symptoms and treatments. I didn't do that until I had already been on immune suppressants and steroids for several months and already (8 months on) regret not having a record of those early stages. 2) Keep in touch on this forum - it is filled with experts!

    Hope all goes smoothly for you,


  • Thank you very much. I will start a diary this week, I had been making a list on my phone!

  • Welcome. whisperits advice is excellent, and this forum is full of help. Take care.

  • Hi there. Sorry to hear you're suffering, but it sounds like your appointment was helpful. I have my first rheumatologist appointment in a couple of weeks and I'm in a really similar position to you. I had bloods done at the GP and came up as ANA positive. I started with sore and stiff fingers and hands but not really swollen or red. I'm also a keen runner and had lots of joint pain that I originally blamed on running. The fatigue for me is the worst thing, although I seem to have improved a bit recently, the last couple of months I've been permanently exhausted and aching all over. I work hard to survive the week (4 kids and I'm studying for an MA) and then at the weekend I collapse and can barely leave the house. I feel like I could have Lupus or RA, but looking forward to getting an expert opinion! Thanks for sharing your story- it really resonated with me and made me feel a little less alone. I hope you have a great Christmas! Deb

  • I was convinced it was RA because my grandmother on my moms side had it. Lupus was really in the back of my head. I think I'm beginning to realise that I won't just get a firm diagnosis for a while. I'm just glad I will be getting some medication to try and sort the pain and fatigue.

    I'm going to pace myself as much as I can but I think i cannot give up running... I don't think it will be easy and certainly not like I did before but I will try it out like a beginner and see what I can do.

    Working, degree work and kids..sounds all too familiar! I think i may have had signs before but explained it away by my lifestyle. Really going to start listening to my body more!

    Good luck at your appointment. Take a list of symptoms with you even if you think they're unrelated. I put mine on my phone so I wouldn't forget!

    Happy holidays and thank you for your reply. Kristi

  • Hi DenverKUK,

    Welcome to the community. Good luck with your further investigations and diagnoses. I'm pleased to see that you have had loads of great advice from other members of the community. If you want more information about lupus and how it is diagnosed, we have a free pack which you can download or request at lupusuk.org.uk/request-info...

    If you want more information about 'sticky blood' (antiphospholipid syndrome), I recommend that you go to aps-support.org.uk/

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