Sticky Blood-Hughes Syndrome Support
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Worst I've felt

Hi everyone,it serves me right ! ! But I've felt a fraud for ages. I felt quite well until yesterday. When I got up,my chest was sore and tight. I put that down to getting a cold. Last night I went to bed early, I just didn't feel good. I got up during the night to go to the toilet. My balance had totally gone. I bounced off everything.

This morning every joint aches or has a pins and needles feeling. My balance is atrocious and so tired. My chest is still sore, when I cough it hurts, but I'm not coughing anything up. Are these common symptoms ? and I've just been lucky until now

Christine xx

7 Replies

What happened with the meeting with prof Belch at Dundee two months ago? She was going to take more tests.

If she is still investigating your "case" and you have not yet got the best anticoagulation you may still feel awful. Perhaps you have also got a cold and it is therefore you are couging. Infections make us also feel awful. If your couging will not be better I think you should se your GP or some Dr. Hope you can avoid coughing drugs because they should not be used as coughing is part of the process to be cured.

Best wishes from Kerstin in Stockholm


Hi, I saw Prof Belch, but because of Christmas and New Year, she hasn't got all the results back yet.


Ok. Good. Then you must have "ice in your stomach" (we say so in Sweden) and wait a bit more for the right drug to kick in I guess.



Its been a while I'd chase them results if I were you!

I also agree with all the above!

Good luck and best wishes



Hi, you need a check up with the GP in view of your medical diagnosis, but take into consideration that there are some awful Flu bugs and viruses around currently that are making people quite ill and on top of what you have already could make you feel considerably worse. I would still be checking out your condition as well as that though! MaryF

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Here in the States we have had an awful flu season so far. The vaccine was only 20% effective. Sounds like the flu to me -- but then, that just might be because so many people around me are coming down wiith it. (Fortunately -- not me. I did have a bad cold a few weeks ago)


I had a similar bout - it scared me so much I rang my Rheumatologist, I had never really experienced the joint pain side of APS then suddenly all my joints hurt at once - so badly I could hardly move. I had a fever or something in the night, felt really giddy and horrible, then the next day could hardly move any joint without this really horrible pain. Rheumatologist wondered if I had had a virus, but is was at a time when they could not get my INR up and I was having to have Heparin injections as well, so I do wonder if it was a flare of the APS - joints never fully recovered, and I have had one more bout of it (lesser fever, slightly less over all joint pain), they have put me on Plaquenil because of the continued joint pain it caused. If you are worried I would talk to a medic - is Prof Belch an APS knowledgeable one? - if so you should ring him/her and say what has happened - if nothing else it puts you in their mind so might mean you get some correspondence quicker!


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