Hughes Syndrome APS Forum

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Julieanne profile image

Hello, Just a brief question!!!! ........ does anyone know if you can get terrible pains in both hip joints due to the above syndrome. It seems to be getting worse and wakes me up at night in bed, during the day it is not too bad although I am quite stiff and have pain in my lower back. I thought I had to have a hip replacement eventually but I have been told it could be down to the syndrome. If this is the case, is there any cure or treatment to be had as it getting me down at the moment? Thanks.

23 Replies

Yes aps has given me AVN and osteoarthritis-- i already had a core decompression done on right hip and now i may need a total hip replacement soon again on R hip and most often it goes bilateral. -----jet-- no doubt in my mind

Julieanne profile image
Julieanne in reply to jetjetjet

Oh dear it does seem that it sometimes goes hand in hand with APS for some then? I am not sure if I am glad or disappointed as there does not seem to be a cure one way or the other apart from an operation for a hip replacement, which means I would have both of them done eventually. No looking good then is it, will have to go on a diet then as they the GP will only tell you off if you carry too much weight. I was totally unaware that APS could give you all this, what else does it give you than I am totally unaware of? Ignorance can be a bliss sometimes!!!!! Thanks again.

Hi Julieanne

I woke up one day with terrible hip pain and after lots of investigations and treatments, none of which did anythinbg, I went to see one of Prof's team at London Lupus Centre. He told my GP to get an MRI and, bingo, the aftermath of a clotting incident was suspected; transient osteoporosis, transient AVN and fluid in the joint and the bone marrow.

Luckily it did settle down on its own and the bone and joint returned to normal.

Best wishes.


Thanks for replying, much appreciated. My problem with the hip has been ongoing for about 12 months at least I would say, so its not like it happened like yours. My problem is now that its getting worse and the pain wakes me up more frequent in bed and I have to shift from one side to the other, but because both sides of my hip hurts I have to lie on my back, which I don't normally like doing....but hey if it this helps me to sleep well this is the way forward at the moment. So do you think its part of the syndrome then ~ or is it just my hips that are giving up on me?? As far as I know, I don't think I have had any clots but like so many people it could be the beginning of osteoporosis and that would mean a hip replacement eventually I would suspect ...oh great!! Now then I have to go on a diet also as this does not help to carry the extra weight. Glad it settled down for you, you're one of the lucky ones!! Thanks.

Agree, you should get an MRI. If it is AVN then getting on the proper blood thinning regimen should improve the blood flow to the area and might take care of the problem. I had this problem in my foot and the pain went away quickly once I got on the proper Rx which in my case is twice daily lovenox and plavix. As APS said, could be other things, too.

That sounds exactly like a problem I had and my rheumatologist said it was bursitis.

From memory she just suggested panadol/tylenol and if it didn't settle steroid shots. It settled after the steroid shot. But I just can't remember now if that was how it all went as so many bits hurt at different times....

i know my shoulder settled with the steroid shot and think the hips did at that time too.

Might be worth asking the dr could it be bursitis but definitely get it investigated.

Jmeaj profile image
Jmeaj in reply to tassie

i get steroid injections in both shoulders every 3 months. cant take the pain without them . been having hip pain for leat 10 years n saw a video talking bout Avn bout a month ago n my pain dr just did xrays but now im wondering if it will show anything or it i need a mri

I have had hip pain (Nothing showed on x ray) physio and gp said probably due to longstanding lest sided weakness from strokes (which distorts my walking pattern). Exercises physio gave me have helped.

Get an x ray done and see what it shows.

Herb profile image
Herb in reply to Herb

I meant Left sided weakness (hemiplegia) I have had it over 20 years).

Nothing showed on the x-ray in my case either and it was only the MRI which showed all the problems.

Best wishes.


In case you don't already know this -- one's chance of acquiring another autoimmune disease goes up by half with each diagnosis of an existent autoimmune disease. And there are some grouped under the name " spondaloarthropothies". These are not usually paired with APLS the way sjogrens and thyroid issues are. But they do exist. And, since your pain is on both sides, you should include a evaluation by a rheumatologist in your "consultant to do" folder if you do not get clear answers from future tests.

I had bad problems with my feet also -- meds did help that - but they found the avn in hip and it progressed rather rapidly , faster that they thought. not trying to put a scare into anyone,but having it checked would be the way to could be a number of things . they [my Doc's] thought it might of been the osteo in my hip , but the tests showed the avn. lets hope it is something less serious with you. let me know how it pans out . sorry didn't want to put a scare into anyone ----- jet

I started having pains in my hips and lower back in early 2012. The pains were only really around at night when I was lying down. I seem to be able to get so little sleep. I started taking Night Time Tylonol and that seemed to help a bit. Every morning I would get up and do my exercises and the pain would pretty well clear up. I tried doing a lot of things, exercising at night to see if that helped, placing my arm or a bean bag under the base of my spine etc. I started the process of testing (one doctor said it was Sacroiliitis) and finally had an appointment with a specialist in December. I remember the day I went thinking that I had not had a bad night and wasn't that typical! After more xrays etc he could come up with nothing in particular - growing older??? However, it was difficult to argue with him because as quickly as it had appeared it disappeared. I think from the first time I felt there might be some improvement until I could honestly say that I had no issues was about 2 months. I hope you have good luck too.

Hi Julieanne,

I have recently had a totally knee replacement and a new patella plus a couple of years ago I had right shoulder decompression surgery. I was told I will need future joint replacements and also another knee replacement on the same knee because the joint replacements only have a limited life span.

I also have severe arthritis in my back, central canal stenosis etc. and all this severe arthritis was discovered on MRI scans of my whole body. Yes, I am always in pain, I even take Morphine but I can never get more than a couple of hours sleep at night. Even when sitting in one place for too long my total knee replaced knee stiffens up; I have been told it can seize up completely so you have to keep mobile and exercising. During the night when I am sat on my bed, usually on my laptop, My knee seizes up and the pain is excruciating. I have to take / put on the Lidocaine dressings that I get on prescription and have to wait a while before I am able to actually try and get off my bed. In my back I also have severe arthritis too, and I have two slipped discs and my spinal cord is crushed permanently in two places. My pelvis is severely arthritic and I am also hyper-mobile which the specialists say only exacerbate the problems I have.

These pain problems are caused by arthritis, but I cannot tell what pains are APS related and what are arthritis related. Can anyone explain the difference? Is the pain the same. Yes, I also have hip pains and have been told when I am older I will need two new hips as well as more knee replacements. If it is pain due to APS maybe there will be a different medication I can take for a bit of pain relief but to be honest my pain medication does not get rid of any of my pain, however many different types of painkillers I take. I am also awaiting a medication review at The Pain clinic at the hospital but I need steroid injections but I cannot take these for other reasons nor can I take NSAIDs because they give me bleeding bowels (blood clots). Is there any information that I can take to my Pain specialist in addition to what he knows about steroid injections. I mean, any literature about APS pain to make him understand that is isn't just Arthritis pain but it could be due to APS which he hasn't a clue about what it is. I am so desperate for a cure but have been told I will never be pain free, which is why I see the Pain Management Clinical Psychologist and I have been seeing this psychologist since January..

Everyone, friends etc. tell me to try alternative medicine because I cannot possibly carry on living with so much pain. Does anyone else have any ideas for pain relief I have read the about answers to your question Julieanne..

Thanks for bringing up the problems of APS associated Pain.

Hello Juttyjean, I thought I had problems, but they are nothing in comparison to your problems. I know all this is so frustrating as my GP does not seem to know much about the condition, or at least very little knowledge. I have not been referred to any other consultant during the time I have been diagnosed, 16 yrs ago or thereabout after my 4th miscarriage was investigated. I really don't think I am getting the proper care that my fellow suffers seem to have. If I don't go to my GP I am not called in to be investigated or to see how my levels are doing. If I don't see my GP for 9 months so be it, I am not called in unless I go there for any other problems and I happen to mention my APS ....wird or what!!!! Oh well there are so many people, like yourself, that need more care that me, so I am one of the lucky ones by the looks of things. I will go to see my GP regarding the pain in my hip though as this is starting to get me down as I can't seem to settle for long in bed before the pain starts and I am afraid it will only get worse as it has deteriorated in the last few months to what it was. I really do feel for you though and I really, really do hope you will get some pain relief to you're condition, it looks like we are only in this together one way or the other. I am glad that I have asked the questions regarding APS and his pain, boy there are so many of us out there that have very similar pain and problem associated with APS. Good luck to you all, I will keep checking the site to see if there is any progress report.

I get hip pain but I do also have lupus.

Lupus doc said it was probably referred pain from the degenerate disc in my lower spine, as nothing showed on hip x ray, however physio who has been treating me for left sided weakness (due to multiple strokes) gave me exercises which helped. The exersises were to strenghen my left leg and left side.

GP then said pain was probably due to left sided weakness (which physio had hinted at). Chronic left sided weakness will cause a lot of musculo skeletal problems.

Hey Jullianne,

I have APS, Lupus, and other autoimune issues. Like yourself, I also have hip problems. I've been doing physiotherapy for over a year now. Before that I wasn't able to walk like a regular person. I wasn't able to do exercises. Walking a mile was hard for me. When I was losing hope, my rheum has indicated me to an orthopedist, Through the exams he was able to see that indeed I have hip problems, but he advised me to do a very simple exercise before consdering surgery (which I was certainly considering). The exercise consisted in staying straight and work your balance by folding up one leg. Hold the leg up for 10 seconds. After this time, I switched to the other leg. Repeated 3 times for each leg. In less than two weeks I was pain free and was able to improve the difficulty level, adding weights. Have you tried this exercise?

Regards from Brazil.


I had a clot the entire length of my right leg and into my groin area. Ever since then my right hip has been a disaster, but after a year maybe I have pains in both hips and knees. Now I have alot of pain in lower back. Every time I get x Ray's and MRIs they find more areas with arthritis, which I didnt have before. Seems like every joint in my body is really stiff and sore, but my lower back, hips and knees are the worst. Also get foot pains where it feels like I am walking barefoot on rocks.

Wittycjt profile image
Wittycjt in reply to Kalykrill

This is an old may want to try a new post if you have questions...but you may have just been exploring around- all the best, Cindy

Kalykrill profile image
Kalykrill in reply to Wittycjt

Was late Last night and I didnt even noticed the date.

Hi can anyone tell me what this would look like on mri I’m still no further with diagnosis but I know 4 years ago I had a hip mri and it shows bone marrow changes it was all misty on the screen worn joints and tearing.

Ever did get a explanation for this xx

I agree with you as my hip is giving me pain too. Never realized coul be connected to APS though. I have arthritis and bone spurs in hip and natural deteriorating from age. Got shot and going for therapy. Too early to tell yet is successful

I have terrible hip pain in both hips. I know I have clot damage on right side, but left side didnt have any damage. I had x Ray's and dr said it seemed ok, but I know I need more investigation into this. Standing sitting laying down, doesnt matter they hurt alot. When I wake up in the morning it takes an hour for ke to get out of bed. When I am sitting in my chair for more than an hour from lower back down it becomes very painful. Even my feet hurt alot. Like walking barefoot on rocks. I have complained to my drs and my mental health team and they just usually speculate, never investigate. Since I am a disabled veteran I can only get care from the VA hospital, but am trying to get authorized to see a specialist outside the VA healthcare system. I finally told my so called specialists that they dont have a clue what they are doing for me and they need to start studying and learning. I've been diagnosed 12 years ago and aside from warfarin, pain meds, and a few steroid shots in the lower back(which didnt help) they havent done a thing. Mental health specialist blames everything on depression and they just seem to all have their heads up in the clouds.

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