Sticky Blood-Hughes Syndrome Support
8,085 members8,324 posts


I have a weakness down my left side, I try not use my stick when I am at home, but use it at work as I stand up.

Head pain is so painful at points that I would rather give birth.

Memory comes and goes remembering how to spell is getting worse and forgetting what im saying half way through..

Tiredness getting me down.

Lack of wanting to eat means its worrying my GP even though I need to lose weight.

Shorter temper than normal

Feeling sick all the time

Pins and neddles in hands and feet.

Being fed up most the time.


5 Replies

And head sezures too in just in my head, my head will just shake hard and fast, plus I black out


Karen it sounds like you need to have your medications looked at again. Please go back to your Doctor with this list of symptoms that you have especially the fact that you say you are having seizures. You must make them listen to you. Do you have somebody you can take with you?

Im sorry you are feeling so unwell at the moment. x


I have had two med changes I seem to only have seizures when I am stressed. The doctor hasvmy listed. I am having my iron levels checked too. As my headache started Monday and its Friday today and have woke up with it again :-(. Fed up with going hospital and for them not to understand APS, Neuro are a waste of time at Leicester. I was asked why I was not on certain drugs, I said its because I was allergic to them the doctor said that was rubbish,this doctor had not read my notes, got up and walked out, I was not staying there to be insulted.. I take a friend with me who is a nurse. I feel that the NHS is hit and miss to get better with, I know Leicester Royal Imfirmary is not the place, as I was given the wrong drugs twice both times it was ones im allergic too, plus they send you home other peoples drugs too.

I was in the other night as the kids found me face down on the floor, the doctor wanted me to stay in but I said no, and gave him the drugs back he gave me as they were wrong too.

I carry a list of what I can not have because either I am allergic too it or I wont go with the meds I am on. Seems the hospital ignores that. :-(

I met a lady who lives in Leicester and she has lupus, she was saying that is hard work finding a doctor who understands that, she was told she had all sorts of things and she kept telling them it was lupus. She agreed with me the less they knew about a conditon the ruder they were to make you feel stupid.


your first post was like a list of how I feel,then I read your second am are flabbergasted that you are not taken more seriously if you are having seizures,do hope you get things sorted out,sending a hug for what its worth


Hi there, you definitely need to be reviewed by somebody with more knowledge, have you given your GP the Hughes Syndrome Foundation website link which has specialists in your area? Also bearing in mind that this condition often brings with it Sjogrens and at times stubbornly hidden thryoid issues, that needs to be looked at, the loss of appetite whilst still gaining weight rings a bell. Also untreated thryoid issues cause pain, make other conditions worse and can cause terrible insomina and depression. I hope you can have a review, and taking a nurse friend along with you is a very good idea. Let me know if you wish me to dig out any links for you. Mary F x


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