Sticky Blood-Hughes Syndrome Support
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What do others consider amounts to a flare?

This is an odd question I know.

I have lived with fatigue, pain, no stamina, headaches etc all my life and I'm 51 now. Trouble is I don't know what normal is.

I know now when my INR falls below 3 I feel like death warmed up. I have also noticed on those very bad days I get the lupus colouring on cheeks and nose, tho no doc has ever seen it.

Now the prof said I could have steroids for a flare but how do I know in order to ask.

I know it sounds dumb but feeling like I do is my permanent norm.

7 Replies

I get steroids every month or at the most every 6 weeks during flares. While I am in pain every single day, during flares I want to crawl into bed and die. The pain is debilitating, and the joint pains make it hard to even hold the wheel while driving. My rheumatologist actually just told me to stop being bashful about asking for help during bad flares. They told me that there is no reason I should be forcing myself to suffer so badly when they are willing to help.

The steroids aren't a miracle by any means, but they do amazing things with the fatigue and joint pain. I have loads of energy on them, and feel as close to normal as I'm probably ever going to get. I even get less headaches on them!

I am not on warafin so no INR to check, but I suppose you could ask for the steroids when you feel the warafin isn't helping enough. I know they have side effects, but so does feeling like death daily ;)


I think everyone will be slightly different from others, I myself have a very very low pain threshold, so I don't even try to fight it, but I guess like momtomany said, you just want to crawl into bed and wish it was all over. I have never taken steroids for this, I've had steroids for other reasons, and the benefits far outweigh the negatives! I personnally feel it hard to function, I'm sore and achy, tired to the point of exhaustion, I've learned the hard way, you just have to ' lie down and let it go through you' ... That's what I do anyway, I don't make myself any better if I try and carry on. Hope this helps Sarah x


Thanks I was given a week of steroids many years ago for asthma long before diagnosis and they were wonderful. I was very shaky on them but felt like I could run a marathon. It was a wonderful week.

As it is the Prof at London Bridge who has suggested it when I need it having lived like this for decades I wondered how I would be able to quantify to my GP when I felt I needed them.

I recently had a cold which I know are considered minor but I was so wiped out I could not raise my arms and climbing stairs left me breathless with a racing heart. I think then would have been a good time for them.

I think I will email the Prof about writing to my GP so she is ready if I need them.


Any change with my hormones, or reaction to virus or exercise, and I seem to appear as if I have some sort of flu. I have to rest or it does not subside! Mary F x


About a year ago I went to a chiropractor as my head was stuck. He asked me how much pain I was in. He went on to explain how

to rate pain, asking such things as what it stopped me doing and the extent the neck pain was effecting my life. I felt quite foolish as I tried to explain that I have a low pain threshold when it comes to things like paper cuts (I never wax!) but as I spend so much time with period pains, headaches and lower back pain (I guess most of you know the list) I really couldn't but this particular problem (caused by my job, non Hughes syndrome problem) in to the whole mix. I've twice nearly died due to doctors not really believing my calm voiced assurance I'm in pain which turned out to be late eptopic pregnancies.

To cut a long story short, the chiropodist categorized my pain as mild discomfort. He was later shocked to find several dislocated vertebrate which he completely refused to believe I'd had for at least 6 months and hadn't missed a days work.

I tell this story because when we are constantly complaining (in our own heads) of the pain we are in - maybe, just maybe, we don't have low pain thresholds. May be, we should all pat ourselves on our backs for coping as well as we do!


This so true. I think we have often got a high pain threshold, or a very low complaint threshold. I personally mostly don't bother telling anybody of my pain as it would be boring since it never leaves me. My OH can read me like a book so he knows when I am struggling by my face. But other people struggle to understand and often expect me to be able to join in normal activities.

I have a relative just diagnosed with osteoporosis her spine has collapsed, yet she struggled on, did her hair put on her make up and then the GPs asked why it was getting her down and told her she had nothing wrong. I'm still very mad about that.


I read your story about your relative, it was really bad. I too don't talk about my pain, but in my own head I'm constantly complaing. Your really lucky to have someone who knows your struggling! I don't much mind other people not understanding, I've had undiagnosed health problems for at least 20 years and am dyslexic too so that's a way of life. What gets me, is how those of us who work really hard to carry on are penalized by the medical profession who assume if we manage at all we don't need help, whereas if we just sat there and said can't we might be taken seriously.


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