Sticky Blood-Hughes Syndrome Support
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Hip pain mystery, any detectives out there?

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.

11 Replies

Hi there seems to be an awful lot of dissatisfaction with that department currently, which is a shame as it used to be thought of differently. I can't comment as I attend a different department in the hospital. I myself and quick to praise good quality medical appointments and fill in feedback, however if something is wrong i would give detailed feedback. I suggest you contact PALS and raise this with them, also consider leaving feedback on NHS choices, you do not have to use your name. Also if you are desperate and have a few spare pennies, take all your latest test results and get self referred to London Bridge, this is only an idea by the way. MaryF


Thanks Mary. I appreciate your input.


Mary, that's what I have been trying to say. I think there's definitely a change of culture even at London Bridge also in my experience if you might remember our brief exchange re. seronegative. Kind Rgds,


I think you should put the question to the Lupus UK. Most of us have only Antiphospholipidsyndrome here. This is a special site for Hughes Syndrome. I know very little of Lupus.

Mary F always have very good answers so stick to them!

Best wishes from Kerstin in Stockholm


What you speak about is not unusual I'm afraid although I have not heard about it being so acute as to render you completely unable to walk. have you had MRI's done of your hips? Bursitis can be very painful but injections can also be very helpful too. I don't understand why your GP isn't referring you urgently to your local Pain Clinic where they can take care of this.

Unfortunately StT is no different than any other Hospital at the moment and funding will be at the centre of everything. I have not heard of anyone who gets actual treatment at the clinic it's more just a case of diagnostics and recommendations for treatment. I've often wondered why people don't get referred on to different departments for evaluations, MRI,s etc but it seems your even lucky to get blood tests now.

Personally if I had all the tests I'd consider the private route otherwise you will be stuck in a rut for many more months, possibly years. Sad to say but there you are.


Hello and welcome

I have primary APS and was treated with Warfarin for many years; I am now on Fragmin.

While i was on Warfarin I had a major hip problem, sudden onset terrible pain and difficulty walking. The hip was swollen and that leg seemed to feel longer, with the femur head tender and displaced outwards too. I went to see one of prof Hughes team at London Lupus Centre and they got my GP to order an MRI scan which showed: fluid in the joint, fluid in the bone marrow, transient osteoporosis, and transient necrosis. This incident was attributed to a clot in my hip.

I would strongly recommend that you ask for an MRI of the hip.

Do you have a diagnosis of APS/Hughes Syndrome?

Best wishes and good luck and let us know how you get on.


1 like

Thanks very much APs not Fab and Manof Mendip. Appreciate the reality check. Luckily I am due an MRI next week. Please can I ask you, is it essential that the hip still hurts for the MRI to reveal answers? Or will stuff show up? Because the hip / buttock pain has been on and off for over half a decade and I'm worried that on the day I get the MRI done, I may, randomly, not be in pain and so nothing will show and then the pain will come back again a few days later and then I'll have to go through the whole rigmarole again!

Ps Manof mendip, was it worse when you lay down / tried to get up again?

Thank you.


Not sure, but just keep notes of everything you do and also get copies of any blood tests and things in case you wish to go to London Bridge, again, as before it is thyroid panel, ANA for Lupus, plus tests for Hughes Syndrome/APS also Vitamin D, B iron and a Thyroid panel... this will help you immensely and anybody looking after you. MaryF


I had my hip replaced a year ago after 20 years of increasing pain and disability. It was always attributed to "just" osteoarthritis. I suspected then, as now, that necroosis was at least a bit involved because the pain would go up and down with my INR level. (of course the pain also went up and down with weather conditions which does point to osteoarthritis.)

But OA or necrosis -- if either the inflammation or the bone clots are causing the problem, the MRI should show it. Both conditions cause the cartiledge around the bones to wither away, which causes bone on bone friction, which causes the pain. Even if the cartiledge has not been directly effected by necrosis there should stiill be a visable loss in density in the bone.

I fought having the hip replacement for 20 years because, like you, I have always been an active person. At first I denied that I ever would need the surgery as I found much imporvement from GF diet as well as from physical therapy. But eventually I had to concede.

But in hind sight, I think I folllowed the right course. If I had a replcement 20 years ago then I would be looking at a 2nd replacement now. And at age 59 I still have miles and miles of hiking to do.

I do hope you find your way out of this diagnostic hole. I am not in the UK so I can not offer practical advice on dealing with UK medical politics. But here in the States, I have been able to use my insurance company (usually considered the bad guys) to argue that "treating me now will be cheaper then treating an advanced condition later." Using that argument always got me an additional round of physical therapy ordered which was hyper-useful in post-poning the surgery for 20 years. Which means I will probably never have to have a 2nd replacement on the left hip. Which does save the insurance company hundreds of thousands of dollars at a cost of a few hundred for my PT treatments

Good luck! And let us know how it goes!

Gina in West Virginia


Thanks a lot Gina! Yes, me too, many miles more hiking, thousands more trees to admire, dozens more lakes to stumble across : ) This hip info is really useful for me to present as ideas to consultants. Indeed my long awaited lupus diagnosis (20 years) was precipitated by help through online forums and thank you for adding to this treasure trove of information. I really didn't know where to turn. Now I can start my battle plan (again!). Hope the autumn leaves in W Virginia are providing lovely views for your walks!


Hi Roromatic

I do deeply sympathise. Would you mind kindly PM me with the name of the Doctor you saw? I'd need to avoid the person...I will add more when I have more time, thanks for posting!!!

Hugs, to you!


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