Hi. Was wondering if anyone had problems getting doctors & specialists to listen to your condition? I had 5 miscarriages before I had tests for APS. Then I went to St Mary's Hospital in London, got diagnosed with APS & 9 months later we had our son. We then moved to Australia & I am having terrible pains in my hip, thigh & back. It feels like my muscles have been set stiff. I only have to sit for 10 minutes & I'm stiff all over. I am now on my 16th specialist, had a nerve block & cortisone injections non if which have worked. I have tried to get my doctor to refer me to a blood specialist but after blood tests she says that I don't have APS & I therefore can't be referred. I'm pulling my hair out sometimes with the pain & have spent thousands of dollars trying to get an answer. I'm so over it. Any suggestions?
Constant Pain in right thigh/hip. - Hughes Syndrome A...
Hughes Syndrome APS Forum
Hello, and welcome to the ,” sticky blood family!”
Firstly, congratulations on your baby- no small feat to achieve small precious feet!
Sorry for your very frustrating, yet sadly familiar tale.
A few questions for clarification, please:
*Do you yourself have a family history of auto immune diseases other than Hughes/ APS?
(Please refer to ghic.world/ for reference)
* were you APS symptomatic during your early pregnancy, and thus commenced on aspirin and / or heparin during your pregnancy and subsequently delivered of a healthy baby, albeit about around the 35th week?
* are you now being told that you only had ,” obstetric APS” , and that you no longer have APS because you are no longer pregnant?
* please note in the website I referred you to, when you click on the APS section, there is a dedicated section just for “sero negative “ blood results. Often results come on negative one month, and positive the next- they can often fluctuate.
This should be enough to get you started. Perhaps show this info to your doctor as a starting place.
Hello and welcome, do you have any paperwork from your trips to St Mary's Hospital? That may help, also the website linked to you by KellyInTexas contains specialists, including for Australia. Also it is pretty crucial to get adequately tested for Thyroid problems also your levels of D, B12, Ferritin and Folate. I enclose this private set of tests as an example of the tests which are needed, as Thyroid problems are often missed if only the TSH is done: medichecks.com/thyroid-func.... Perhaps you can send your GP the website while you wait for a referral, plus any paperwork you have from St Mary's. MaryF
ps also as Professor Hughes himself often mentions, the hip join requires a large blood supply so if the blood is too sticky it can cause a problem with circulation and the hip receiving a decent supply, sometimes this can be the cause. I also enclose this paper for you: the-rheumatologist.org/arti...
As I am not a medical doctor, I cannot give you any medical or clinical advice. That being said, it is easy to attribute everything to APS/SLE etc Sometimes, there is something new.
Has anyone bothered to do a CT or preferably an MRI of your spine? Pain in the thigh can be from the spine, so too pain in lower back. Has anyone bothered to check your hip?
Keep a record of exactly where the pain is located. For example, is the pain in the middle of your thigh? How far can you walk before experiencing any pain? What about at night?
There are basic examinations which can be performed to see whether the lumbar is causing pain. It's not always conclusive but an MRI will show any problem. The CT is quicker and cheaper, but is not as good.
I am about to have my third spinal operation - actually caused by chronic inflammation from SLE. Return to your doctor and insist they check your hip and spine.
With good wishes,
Thank for replying. I have spent thousands of $$$$$ on specialist and MRI & CT & XRays. No-one can find anything. I've had the test where they inject blue dye into you. My joints are lit up like a Christmas Tree! They just put it down to arthritis.
If it is "arthritis" this should not be dismissed as if this is insignificant. This is the diagnosis and there should be a treatment plan, which can range from NSAIDs to corticosteroids and immunosuppressants. There are muscle relaxants and pain relief available.
What has your rheumatologist suggested? There is a wide range of treatment available for arthritis. There are many forms of arthritis. What has your rheumatologist explained? Unless you are given a treatment plan, the pain will not go away.
With good wishes,
I haven't been referred to a rheumatologist. She just thinks a physio & Pilates will do the trick! And yet 6 years later the problems are getting worse!
After 6 years, I would insist on a referral if physiotherapy and Pilates hasn't worked. Or, change your GP.
With good wishes,
Try reflexology it helped me with the pain x
Hi. Yes that's one thing I haven't tried yet. Apparently they can tell a lot from your feet when something is wrong! Thanks for that! X
It’s a very odd experience. The first time I had it done she said I can’t feel you left kidney or thyroid. I dont have a left kidney or thyroid 😱 spooky what they pick up on x
Wow! I found a place yesterday that does it so will book appt today. I'm also looking into orthotics. I'm so confused as this problem arose after I had a hysterectomy. I've heard that the stirrups they put you in can put your hips out if place but after going through 4 GPs & 16 Specialists, blood tests, dry needling, physio, Pilates, massages, hydro pool work & pushing through the pain to do excerise, a chiropractor & stretches as well as thousands of dollars on imaging, my condition is getting worse! It's nice to get messages from people who understand. Thank you. Xxx
First-Welcome to another Aussie I have to disagree with your doctor that you no longer have APS. While the blood tests can go -ve from time to time you're stuck with it! Whereabouts are you (what state) and are you still on an meds for anticoagulation? Took me many years to diagnosis but I'm lucky enough to have a persistent GP who listens to me and same with Rheumy and Haematologist. It's easy to get bogged down in a route of Specialists and start to wonder if maybe you're another "hysterical female" seeking attention!! (...and no! you're not!) I don't get bloods done anymore to confirm APS - The doctors just tell me I'll be stuck with it. Did you get bloods done 12 weeks apart? Otherwise as Mary advises (and she is a great fount of knowledge on here) try to get your original paperwork if possible. Good luck
Thanks. No couldn't even get as far as that. Just one blood test. I'm in SA. I find the medical system over here so clicky! Everyone knows everyone else! I have good days and bad days. Last night was so bad & I'm thinking about doing a video diary for my doctor as I'm sure she thinks it's all in my head! I have all my paperwork from St Mary's but it's not worth anything apparently. I think I may have to find another doctor! Thanks for getting back to me. X
I'm in NSW so not too much help but could be worth searching for a Specialist in Melbourne? Trouble is when you feel crap it's hard to think of anything other than putting one foot in front of the other! If your doctor doesn't believe you and there is no other one close by, you may need to travel to get the help you need. If you are in country SA maybe worth travelling to Adelaide to have someone look at you with fresh eyes? Are you at least on daily aspirin to help with APS? I can't see your current doctor giving you anything while he/she doesn't believe you.
No I'm in Adelaide near the CBD. It's hard as well when you have the proof but they still don't believe you. Def have to find another GP. One lady on the chat asked me what my rheumatologist said. I can't even get a referral to one! No physio and Pilates is all they can suggest! Feel like I'm going mad! Will have to have an ask around with friends about new GPs. Maybe friends who have had the same GP for years. Only been here 7 years. Xxxx
Hi, your right sounds like you need to find a new doctor - please make sure its an APS specialist.
We have a list under pinned posts top right hand corner, also look at our charity ghic.world/ where there is mire information. Look at Prof Hughes posts where he states once diagnosed you always have APS, but yes blood tests can go in and out of ranges. Print these off, and with your notes from St Marys, your video and written diaries go and see this new doctor.
Alongside APS, we are prone to other autoimmune diseases - I mention this as I have sjogrens, this presented itself to me exactly as you mention - intense hip pain. All the MRIs and CT scans came back clear too. Fortunately I have a good specialist that didn't give up on me and sent me off to another doctor who diagnosed the SS and started treatment.
Don't give up, believe in yourself.
I had no idea SS could cause hip pain - I was thinking mine was probably the APS (no diagnosis yet). Had x-rays for hips last week and am being referred to dental hospital and eye hospital re possible Sjogren's. What else can it affect? Any useful websites or books please? Thanks
Hi, I follow the sjogrens health forum on here and it helps me.
We are not medics on here and can only share our experiences and give you our opinions.
My ss is secondary which can give different symptoms to primary.
Go through all your tests and jeep an open mind. Good luck xx
Many thanks, I'll have a look at the Sjogren's forum. Previously told I didn't have it, now possibly I do - same with APS, don't have it, then told I probably did, now possibly don't. Have to keep an open mind really, don't you! Lots of symptoms I've been assuming were thyroid/vitiligo/Raynaud's....Best wishes.
I had my left hip replaced in 2013 -- followed by a knee replacement last year. One theory is that arthritis in many joints just happens in some people. Maybe.
Other theory is that the wobbely gait I invented to deal with a broken knee wore out the opposite hip, and, after the hip was replaced and I was able to walk symmetrically, that knee became worse and needed replacement.
Other theory -- for years I had noted that my hip pain always was better if my INR was above 2.75 or so. No doctor believed the corolations I reported were legitimate.
My theory:? it was a combination of all of the above. (Administrators: correct me if Im wrong! But I read somwhere -- reliable site? or not? -- that high serum calcium which causes arthritis is also associated with autoimmunity.) But though my doctors discounted my reports, I know that a higher INR meant less hip apain! (I did not notice any corrolation between INR and the knee issues.)
No that i have new joints, all is well (knee is still swollen a bit, and I'm told it will stay that way for a few more months.) I am walking better, and --for the first time since age 8 -- mostly without pain!
Since consulting with Cleveland Clinic's Functional Medicine I have become more aware of the relationship between diet and health, and all my rheumatological numbers have fallen from high to what one hematologist called "boring."
Wow! You've been on a journey! I've been left to my own devices now. My doctor just won't listen to any of what I have to say. I just feel like a joke! One guy asked me what I was doing back at his practice when I went for imaging again! 😒
You need a Rheumatologist who is knowledable on Autoimmun illnesses like Arthritis (RA). He or she will also know APS (at least knows you have to take two bloodtests for 3 antibodies with 12 weeks between the bloodtests to get a diagnose) .
These autoimmun illnesses need a knowledable Specialist (we know that on this tite from own experience) as they are difficult to diagnose and often go hand in hand with eachother and are also difficult to treat.
You have to fight to get to that Doctor! Start fighting!
Thank you. I know. Am currently trying to check out other doctors in the area. It's very clicky in Adelaide. Everyone knows everyone! 😒 I had to fight to go to St Mary's in London but you have a definite condition with multiple miscarriages. Proof! Trying to talk to them about this is so hard. I'm sure they think I am crazy and it's all in my head! I've got a pain app now which lets you rate your pain every day and make notes. Thanks for messaging me.
Sounds like bursitis in the hip.