Sticky Blood-Hughes Syndrome Support

This might help with hip pain?

I figured out myself that my 18 month down the rabbit hole debilitating hip pain was partly caused by Hughes, and not just the osteoarthritis bone spur .I raised my INR and the pain dimmed, but did not go away entirely. But with the higher INR I have been able to profit from bio-mechanical therapies.

Things that have helped me and might help others:

Stretches which loosen the lower back and stretch the pitiformis muscle. ( ask your doc first because some of these stretches are ill advised for patients with disc issues. )

Compounded topical NSAID cream with naprosyn. ( Because it is topical, very

Ittle is absorbed systemically to effect the INR.)

Exercises which focus on core and pelvic stabilization ( again, ask your doc first.)

Sample exercises and stretch videos can be found on YouTube. ( look up the credentials of the providers. And if you try something and it hurts more the next day, that probably means, don't do it.)

I am at a point on that horrid APS road where these are helping me. I realize that some day these interventions may no longer help. But in case anyone out there is at a similar point on their journey, these may help.

Kaplach! ( ask a Star Trek fan for a translation.)

Tomorrow, a hiking buddy and my dog are going to try an easy, short trail loop. I'll take pictures and - if I can figure out how--I'll post them.

10 Replies

Thanks for the info, and good luck to you!!!


Hi, there all this sounds very good, I am a firm believer in daily exercise if possible and always trying out new stretches and things. MaryF x


What's the association with hip pain and hughes syndrome.I'm suffering from this my consultant said i had hip bursitis my physio therapist said i didn't but i presented widespread pain not unfamiliar to fibro.My gp said no you don't have fibro you have hughes got my disability tribunal in two weeks and it would be nice to know what I'm talking about.


I was diagnosed with hip bursitis last October but it just didn't seem to fit...... I ended up finding out very end of May that I have osteoarthrits in my spine! Had 2 MRIs done- L spin and T Spine which showed significant facet arthrits and apparently it causes pain to radiate to the hip (and legs at times).

I have been taking some anti inflammatories and also steroids at times as the pain can be severe. I haven't been to see a specialst yet but will soon as I can manage.

Not sure what caused the degeneration of my spine, but I know I want it to stop and get better!

Also, the other day I went on an inversion table at a friend's house and it helped me a lot. Pain is still there and creeping back up there but I am getting one of my own soon and hope going on one regularly will decrease the pain.


if u deen on steriods they also cause pain to hips specially due to nerosisof the bone i swear by water exercises i love it! im able to build muscle mass and have great stretches without joint pain. And i dont fall down


(oops did not proof read ) it should say if you been on steroids


Another consideration for hip pain if you have been through all of the above is Myofascial Pain which causes Trigger Points. These can be really painful but very treatable. The problem with MFP is that you don't feel the pain at the point of the cause so are tricked into thinking its coming from where its not - example chest pain coming from triggers under you shoulder blades. When we are static MF pain can easily become an issue which can be treated with or by a good therapist knowledgeable in this kind of massage. You can also be referred to a Pain Clinic for Trigger Point injections for the stubborn ones.

Hip pain can very often be associated with Triggers and MFP so well worth checking this out.


I've been around nearly all the medical loops on this one.

There is osteoarthritis at the top of the left thigh. The associated bone spur grates against the surrounding tissue in a very noticible fashion. And for years I and my doctos attributed my annual winter arthrits flair to this. Sounds resonable, right?

Until the flair which started in Oct of 2010. It was worse then previous, and did not go away in the spring. I cut my walking down as my rheumatologist suggested and waited for the inflammation to quieten. Previous experience had taught me that only when that sharp, gotcha inflammation pain eased off would the physical therapy and exercises help. Except the gotcha pains went on. And on. And on. I followed doctors orders and did less and less each month.

The only difference between this flair and previous was that I was being a " good" patient. My rheumatologist had said I had become complacent about the dangers of taking Coumadin. He emphatically ordered me to stop taking the oral naprosyn. I did. So I had nothing to fight the inflammation.

Finally, 14 months into this fair, I tottered into his office on crutches to get the necessary papers signed to share info for a consultation with an out-of-town rheumy. Less the 2 hours after I returned home my rheumy's office called for another appt, in which I was given a script for Salsalate and cautioned to take the minimum dose for 2weeks before upping the dose, again in2 week increments, to the max. And the salalate slowly, gradually, worked.

I got back into therapy. I was so weak at this point I not stand for more then a few minutes and I relied on crutches to get around.

( as long as this post is, this is a summary. )

But to my amazement I noted that in good days I could follow the therapists instruction about walking with a level pelvis. On bad days I could not. the therapist, understandably, concluded I was not motivated or focused enough. He gave me these motivational lectures which I hated.

Then, one day, everything worked. perfect! I walked. I stood. I sat. All with that stable pelvis -- not a whole lot of strength, but with a level pelvis. The therapist thought I had finally had my " come to Jeus moment.". I knew it was something else.

My INR had been run that day and the phlebotomist called with the results: 3.1, which was above the range my hematologist preferred.

The lights went on, I got confirmation from this web site that higher INRs can relieve joint pain. . .My hematologist agreed I could try the higher INR -- And here I am. Getting ready to join a friend for a short easy hike on The Snipe Trail.

Is it micro clots in the spine which exerts pressure on the pelvic nerves? Is it the inflmmation from the bone spur --which I still have --which attracts the APS antibodies to that region? Have those taalented little buggers got a taste for spinal ganglia! I have no idea.

But I realize now that the relief the oral naprosyn used to give me during those early flairs was not just due t the anti inflammatory effects.. Yes, the naprosyn was thinning my blood too. But that was a good thing.

Now you can cue the x Files music,

I was seeing a rheumy because I wanted a doctor who knew more about APS then I. But after I had to get out the crutches, and the rheumy was still talking about how it was the weather which was causing my problems, I decided to see another rheumy. And I did, and she said I could try plaquanel or another blood thinner. And yes, even though she was a 3 hour drive away, she would take me as a patient.

Then her PA called me the following week to say, No, they didn't think I should be their patient. I should go back to my local rheumy, he was respected in his field, yada, yada, yada.

What do you all think? Is my impatience with this situation justified? In a few weeks I'm driving down to Duke Medical to see a rheumy there. I d not intend to give Duke permission to speak with my previous rheumy. I'll have all the blood work, and the X Rays, but . .

I know I'm being paranoid, but is it a justified paranoia? Feel free you all to share your thoughts. I welcome both validation and correction.

Just don't give me a motivational lecture about walking with a level pelvis.



I also wanted to say although I'm not s doctor my gut feeling is its my bones one hip clicks and i have low vitamin d.


Thanks. Checked that. The painful hip is osteopenia, whereas my shin and my forearm are stronger then expected for my age. So far no one has offered an explanation for that, but it doesn't sound coincidental to me. Micro clots in the pelvis?


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