Why do I even bother?

Hello there,

I don't really have much advice to offer. It is very frustrating when the rare people that believe you are saying "wait and see" and you're wondering how on earth you can keep going as you have been for what is now seeming to be an indefinite period.

I found that when I was faced with docs they really couldn't get hold of the idea of "it hurts". I could tell them again and again that it hurt and it was like they really didn't care less.

I then learnt to describe what the pain was stopping me doing making sure I took examples that people took for granted. For example "I can't put moisturiser on because I can't hold my arms up", "I can't write on the whiteboard", "I can't sit at the table and eat because I can't sit straight for so long"...

I also learnt not to grin and bear it when going to see the rheumy. Telling her my hip was causing extreme pain wasn't really working. Limping into her office and telling her that that was what it was like most days did. Until then I had been "unlucky" and had better days with my hip when seeing her so I don't think she really believed me. I remember at that viit she was pretty shocked at how difficult any movement was for me.

Sorry I really can't help more but I do know that you mustn't give up. It took me 9 years to get a diagnosis but I did get there.

Katharine

Hello envy
I'm sorry for your suffering so many years. The others have given you some good advice. A lupus diagnosis is a pretty serious business and good doctors won't give it lightly.

I am sorry that I don't have anything all that helpful to say, because I am wondering where the idea of lupus came from in the first place. The diagnostic criteria list was drawn up for classification not diagnosis but it gives a pretty good idea of the most common features of SLE. It is very unusual indeed to get a diagnosis with absolutely no abnormal blood work of any sort and there has to be a compelling weight of clinical evidence. You have checked that all the relevant tests have been done I suppose, including things like complement.
An ANA of 160 isn't all that much and could have many causes including Hashimoto's, I think. But additional antibody testing should be done if ANA is positive.

I think you said this Washington rheumy is a lupus expert ? It sounds as if there is nothing more to be done at this point pursuing a lupus diagnosis.

I think I would do as you propose right now, focus on getting effective pain relief although that isn't so obvious when the cause isn't clear. I'd see if I could get a short course of Prednisone just to see if that helps.

Wishing you good luck and better health before too long
Hugs
Clare

Thank you all for listening and your replies. Right now, I'm not comfortable enough with this new rheumie to ask her to prescribe something because she made it pretty clear she wanted to see other labs positive before she did so. As for past and present symptoms and labs: photosensitive rash, malar rash (whether it's the butterfly one or not, I don't know), arthralgia, myalgia, migraine, Raynaud's, Hashimoto's, ribcage/chest wall pain, low fever, fatigue, night sweats, ANA 1:160, borderline dsDNA (she didn't recheck this), RF 1:80 (she didn't recheck this). I know the numbers aren't high, but by the time I've seen these docs, I've usually hit the tail-end of a flare or the very start of another one.

The more I read on this doctor, it seems she focuses more on scleroderma than anything else in all of her research articles I could find on pubmed central. So I'm at a loss as to why the hospital says she specializes in SLE.

Maybe I should just take these results and have a GP look at them for a set of fresh eyes and an opinion not clouded by a specialty since specialists tend to only see things in terms of their specialty and can lose sight of the bigger picture. I just can't figure out what other set of symptoms is brought on by exposure to sunlight given that my thyroid function is perfectly fine and the symptoms of Hashimoto's would only manifest when hormone levels are off. What do you think? Is my line of thinking off-base here? Either way, I'm still going to be dealing with a total stranger since we just moved to a different area. At this rate, blindly pointing into a phonebook in searching for a GP or choosing from some random list the insurance company provides is all I can do on this one since noone we know here ever needs a doctor (wouldn't that be nice?).

Thanks again for all of your advice and support. Take care.
-Envy