Sticky Blood-Hughes Syndrome Support
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Screaming Lower Back Pain

I have been going through a series of awful flares of lower back pain. I thought they would follow some pattern (i.e. increasing or decreasing in severity); however, mine seem to come and go. They never actually completely go away these days, but they do lessen. But when they hurt, they hurt like the dickens and I am almost to the point of being incapacitated when that happens. I can get variations from day to day, or even within a day, hour to hour. All this, despite my INR being nearly 3.

Does anyone else experience pain like this? Is there a clear reason why?

5 Replies

Do you have any other autoimmune disease/skin problems etc? MFx


I sympathise with you as I am currently having severe back pain (Spinal Stenosis in the small of my back and Lupus over the shoulder blades). I have been taking Morphine combined with solpodol, pregabalin and Ibuprofen, but it is just not touching the pain.

Getting very little sleep, which only seems to make things worse. If it is no better by the weekend, I will check myself into hospital.

Has your GP sent you to the Pain Clinic ?? If not, you should ask to be sent as they have quite a few drugs in their arsenal and can do a lot to help you.

Good luck and I hope it improves soon.


I find heated pads on the sites a real help. Also, I am now on "pain patches". These are like nicotine patches or those for HRT. Their greatest virtue is that you get a constant input of medication 24/7 rather than nothing ivernight when you can't take tabs 'cos you are asleep! I do sympathise with you-back pain is so draining! Best wishes and hugs



I have really bad back, ache at times across my shoulders I have stopped carrying heavy loads etc. Occasionally I get lower back pain. When I do I lay on the floor bring my knees up to my chest and hold If I can I Roll to the side.

What are you taking for pain, Have you got any radiating pain, pins needles etc

If so don't do these excercises until you have spoken to your Doctor.

Have you seen a Physio, The pain clinic is good. Their are medications that can help with nerve pain as well as analgesia and Tens machines

I have Oesteonecrosis caused bt Hughes Syndrome (lack of blood supply to the bones)

Luckily I don't have much pain at the moment it was discovered by Dexa scan and bone biopsy which has damaged my spine.

Your Gp should have sent you for tests xray. mri etc and refered you on to a ?Orthopeadic Rheumatologist pain clinic or Physio

Hope fully he is sorting these things out for you

Horrible to be in pain hope you feels better soon.Sorry if I have said everything you already know

Love Karen xx


Yes, I struggle with this pain all the time. I was taking mobic until recently. I'm now on coumadin so I'm looking at what else I can take now.

All the best to you!



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