Sticky Blood-Hughes Syndrome Support


Hey Guys, long time no see.

I have been working hard, and studying hard. I bearly have the time to write on my blog that despite the lack of feeding for the past couple of weeks, has reached over 7500 views.

Anyway, I have been wondering if you guys also feel exhaustion.I have been so exhausted, it seems like my energy have been drained out of my body. Do you guys feel the same?

7 Replies

absolutely--- some times i get up in the morning - feel fine - an hour later can't even put my boots on !!!!!


Same, not sleepy but body feels like I ran a marathon the day before...

I think it forces me to not stop moving, if I stop I feel it more...


I have learned that when the exhaustion hits me it means something has gone wrong. 2 weeks ago it hit me. Out of the blue. My energy levels had been good, then Wham! Exhaustion. Tuns out I had acquired a fungal infection after a long distance bike ride. After I began treating the bugs the exhaustion went away again.

Now in my youth the exhaustion was my constant companion. Was it because my AS was I diagnosed and untreated? Was it due to other constant infections? A lupus flare since abated? I have I idea. But that constant companion now only makes occasional visits. That'sOK. I never really cared for his company.


It's great to have a Carioca on board,although I guess you would rather not be here.My problems could almost be said to have started in Rio although that's unfair.I had a dvt en route between Rio and Santiago Chile in October 2011 and after lots of tests I was diagnosed with APS.I was a regular visitor to Latin America and miss the travel.My last trip was April 2012 just before my fatigue crash.I had a very atypical onset of fatigue in that it arrived overnight(like an intruder into my house as I slept).At present I am trying alternative therapies to lessen it as I am trying to avoid starting on plaquenil due to potential side effects.So far a vitamin and mineral regime is improving me slowly and surely as of course is the most important regime-pacing.My fatigue is worse in the morning and improves during the day and is best at night so I tend to do more in the evening and have sluggish mornings.I am also practising buteyko breathing which improves breathing and therefore fatigue and have gone gluten free to see if that helps.Low dose naltrexone may be next.I currently use a far infra red sauna as prescribed by a fatigue specialist.I find walking is the best exercise and swimming if possible.My tennis days alas are long gone-ironically my last game was the very evening preceding the arrival of the fatigue intruder(no symptoms beforehand).

Keep well and keep the intruder at bay!



I feel the same

If one day I'm feeling fine and try to do more things like a normal person, the next one is horrible!! As butlertammy says : as I ran a marathon


I find the fatigue exceptionally annoying.. I try and ignore as best I can, probably like the rest of us on here. Mary F x


Thank you so much, guys. It makes me feel better to know that I am not alone in this exhaustion bug. Let's fight it...


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