Please can someone suggest what I can do next? I used to be fit and strong, even with 20 years of undiagnosed lupus symptoms (exhaustion, thinning hair, sun rashes, positive ana), I could still walk for hours, swim, take my child to the park, do part time work, all the housework and even home pilates! Now aged 50 I became over a few months a woman of 85, staggering around on a zimmer, fretting about pain management in case I end up incapable of even standing up to get to the loo in time. I might be ok for two days, albeit limping a little. Then out of nowhere, often when trying to get up after lying down, I'm in screaming agony again which leaves me shattered and frightened.
I know this isn't how it should be.
I was finally diagnosed with lupus recently after a horrific summer where I ended up in a wheelchair with a high fever, sun rashes, swollen, sore lumpy, numb hands and fingers, agonising back pain which shifted randomly from shoulder to rib cage to flank, and a frozen right hip which stopped me walking. I lost half a stone in 2 weeks because I could barely eat. My young child and husband suffered seeing me like this, and we have no relatives to help. Now, 4 months on, having had NO treatment despite seeing my GP several times, a dermatologist twice, and 2 rheumatologist consultants, the rashes and swollen fingers went but I am still exhausted and the hip pain is still there, stopping me from leading a full life, from being able to pick up my child from school, to do even a quarter of what I could do before the flare.
My hips have clicked for years. Sometimes when I wake up I have to click them out in all kinds of funny positions til I'm freed up enough to walk properly. Clicking seems to relieve the sense of having a migraine in the hips. I'm very flexible to the point of being almost hyper mobile, and one consultant suggested this was the problem.
The pain can be in the bone at the top of the buttocks or deep in the buttocks where the top of the thigh bone hits the socket, and it leaves me crippled. Then perhaps after rest, it's ok again. The times of being ok again are now limited to 2 days a week instead of months and months.
I went to the Louise Coote clinic for the first time recently and despite being thoroughly prepared with lab results, consultants letters, a biopsy with a positive result for lupus and photos and diary of every stage of the flare, the appointment was a tragic farce. The doctor seemed to want to use the ten minutes to ascertain whether or not I had lupus. Meanwhile I had the positive results in my hand and wanted treatment or at least answers as to what was causing my hip pain. While I appreciate I was not showing obvious signs of being in flare that morning, I still felt exhausted and in terrible pain from my hips. However I was sent away neither of these and told to, 'Make an appointment for a few months time' when I may or may not be given treatment. I was told there was no way that Lupus was associated with agonising back or hip pain.
I was staggered.
I have read in Daniel Wallace's The Lupus Book that hip, back and shoulder pain is indeed associated with Lupus, whether it's fibromyalgia, athralgia, myosotis, rheumatoid arthritis or worse avascular necrosis (indeed I already have High Lp(a) a blood clotting disorder). My suggestions that these be considered were poo-poohed.
Believe me, I do not want awful medications with all their horrible side effects, or indeed surgery. I am so gluten, dairy, nightshade free I've become the joke of all my friends. But I need to be able to move properly again. I just want answers so I can make choices.
So what do I do next?
Can I ask to see a different doctor at Louise Coote next time?
Any suggestions who might be more helpful for me at the clinic or indeed anywhere in London or the south East?
Has anyone else been through this?
I would be grateful for any responses please.
Thanks a lot.