What to do during suspected flare-up?

[putterbunneh]

I'm busily blaming myself for being too ill to function, just now. Specialist is ordering tests, scans & bloods etc, but thinks I'm experiencing a post-viral flare up. I suspect she's right as I had sore throat for a while and that has often led to flare-ups sometimes leading to serious disorders in the past. I don't know whether to keep trying 'soldier on' or just rest till it passes. My sleep pattern is all over the place! All I can take for the pain is paracetemol/codeine. How do other Hughes patients cope with flare ups?

[DorothyItaly]

Hi there, first throw the blame away! I am afraid rest for me is the only answer - and I have tried soldiering on and just got much worse and taken longer to recover. Take care of yourself.

[putterbunneh]

Oh thank you so so much Dorothy! Just what I needed to hear. I know deep down that this is the kind and sensible thing to do. xx

[putterbunneh]

Yes, I had mouth ulcers too. I think strep infections start flare ups for me. Maybe that was what it was. I've no idea where the heavy guilt feelings come from though! Fear that I'll never get going again might be the culprit. I have backed out of some commitments and been truthful about how ill I feel - rather than giving my usual lame 'headache' excuses. Thanks for your good wishes. x

[olleberj]

When I'm not feeling well, I really try to listen to my body and to give it the rest that it needs. I understand the feeling of wondering if you are ever going to feel better, but I think that's just part of feeling ill. Your body and your mind are over-stressed. If you are able to do so, give yourself the permission to rest and enjoy the down time. Sometimes I think I get sick just so my body can get some rest. If I don't give it the rest it needs, it knocks me down and forces me to relax.

[putterbunneh in reply to olleberj]

Thanks. You're so right. Six months ago, I had to retire for health reasons. Before I retired, if I didn't work there was no money - no sick pay. So I felt horribly guilty about resting when ill. And the daft thing is that now I've retired and am free to rest when needed and I still feel guilty about it. I'm still stressing myself for no good reason. Crazy! x

[olleberj]

Sometimes I wonder if that's why we are sick...we do too much and we feel guilty if we're not over-working ourselves.

[putterbunneh in reply to olleberj]

I think I do that! Looking back many new symptoms have started at times of stress and over-work. Main trigger for me was hormones - but stress a close second. My sister has MS so I've read a bit about it and some, on the internet, talk as if 'guilt' is a symptom for MS patients.

[CaliforniaGail in reply to putterbunneh]

My sister has had MS since her teens, and now at 62, is in a wheelchair. My APS didn't pop up until I had pneumonia at 55 years old, after an extremely stressful 3 year period of nursing my Alzheimers mother who had Rheumatoid Arthritis. I really believe the chronic stress I was under, with the viral infection, along with my family history of autoimmune disease, triggered APS and my blood clots. I can't say guilt has been a problem-- I always felt blessed with having a healthy life when watching my sister and mother cope with their autoimmune problems, but perhaps there was. It is only recently that I do beat myself up when not accomplishing my "To Do" List-- sometimes just a simple task or two -- and I keep telling myself the brain fog and lack of focus seems to be taking control, so it's not my fault... but I still feel it is and that I can do better.

[Paleosooze]

Being a newbie, I'm wondering, are you talking about lupus flare-ups or does APS flare up too? I've just been diagnosed (APS, not lupus) and just starting clopidogrel, so I guess I'm just one big flare-up right now but I frequently get mouth ulcers and feel like I've got the flu.

[Sal0712 in reply to Paleosooze]

Yes APS does have flare ups. I've had a couple now, and the answer for me is rest, but I do still try and take a short walk a day, not only for fresh air and exercise, but to change the scenery. I find that during a flare up, if I don't get out, it makes it worse being stuck behind four walls!!! No-one is the same, you have to listen to your body and over time you will find what works best for you!! Hope you are feeling better soon (well, as well as you can anyway)!!! Sally x

[Paleosooze]

The consultant at St Thomas's said I didn't have sjogrens because my eyes were not dry at all on the test (that surprised me because to me they've always felt dry!). He said I do have a generalised low grade automimmunity, whatever that means! My sister has sjogrens and borderline hughes and is coeliac and hypothyroid like me too so to be honest it really surprises me that he said I don't have sjogrens! What are the blood tests for it? I could check my blood results to see if any of them are relevant - thinking of seeing Prof K privately anyway.

Thanks!

[GinaD]

I enjoy TED lecure/podcasts. But I'm quite behind -- currently "only" 60 some podcasts are waiting for me to view them.

But yesterday I viewed one from a psychologist who has studied the relationship between posture and hormones. (Yes, that's what I said. Posture and hormones.) Turns out our grandmothers were right. She and her staff (it would be so helpful if I remembered her name -- which I do not and the podcast has now been deleted from my computer) took some volunteer/ test subjects and suggested they sit for 2 minutes in a "passive style" (anything that makes yourself smaller, head down, or to look frightened in your body language) OR an "aggressive" style (hands up and out, legs apart, head erect, etc.) She took saliva hormone tests before and after the 2 minutes sitting, and added a small gambling game after the 2 minutes sit.

Results? Wildly enough, those in the passive poses (both male and female) had lower levels of testosterone and higher levels of that autoimmunity enemy, cortisol. Those in active poses -- again, both male and female -- had the opposite.

So! Our collective grandparents were right to nag us about sitting up straight! And for what its worth, I"m going to consciously try to keep my posture in an open, aggressive style in hopes that (incrediably -- I'm still having a hard time believing her hypothesis) I will generate more anti-inflammatory testosterone, less inflamatory cortisol, and therefore, less pain!

Well -- sounds ridiculous, but it sure is cheap enough to try.

Gina

(and no thanks, I do not want to buy shares in the Brooklyn Bridge)

[putterbunneh in reply to GinaD]

Lol - interesting! I didn't know testosterone is anti-inflammatory.

[GinaD]

OK I tried to consciously sit in an open aggressive manner during my most rcent dentist check up, and, I think ther may have been less pain. No way to really compar of cours, but I THINK the more upright posture meant less pain during that painful tooth scraping.

[taffydaffy]

Hi

When I have a flare up I have steroids 30 mg per day for 5 days I ware 2 butrans patches 1 x 20 mg and 1 x 10 mg plus 2 Tramadol and 2 paracetamol stay in bed until I feel better x