Hi

[daisy82]

I saw a piece about this syndrome on This Morning today and when I Googled the symptoms it was a bit of a Eureka moment! I was reading a list of me!!! I am diagnosed with polycythaemia and fibromyalgia, but I will certainly be asking to be tested for Hughes Syndrome now. I have a couple of questions...

Are severely heavy periods and muscle spasms (mainly the trapezium) common in sufferers?

My 18 year old daughter has epilepsy which has been put down to poor sleep, should I be thinking that she should be tested too?

TIA

[MaryF Administrator]

Hello again, yes your daughter should be tested, I have this condition as do my children, the symptoms are wide and can vary person to person. Please also check your thyroid, so often being labelled Fibro, discounts the under active Thyroid, due to poor testing. The trio of disease is often Hughes Syndrome, Sjogrens Disease and Thyroid Disorders, Professor Hughes widely writes about this trio of disease. MaryF

[daisy82 in reply to MaryF]

Thanks again Mary, I'll speak to her about it. Also, is recurring sore throat and swollen glands maybe linked?

[Manofmendip]

Hi daisy and welcome.

Dave

[daisy82 in reply to Manofmendip]

Thankyou, hello.

[Lure2]

Hi Daisy82,

I think you should look at Hughes Syndrome Foundation Charity website

hughes-syndrome.org/

Also read "Sticky Blood Explained" by Kay Thackray, who has APS herself and writes about the many symptoms there are with this illness. It is written some years ago and the latest drugs are not there , but the symptoms are the same. It is a very good book to understand how it is to live with this illness. Also good for relatives and friends to understand better.

If you still think you may have APS the big issue is to find a doctor who knows what APS is about; that is too thick blood. When the blood is thinned we are much much better but there are very few doctor who really understand this illness so you have to search for that Specialist.

A Rheumatologist and a Hematologist I have here in Stockholm and those two types of Doctors are the best to understand APS. The Neurologists we have found on this site, do not understand our illness and that is has to do with our too thick and sticky blood which need to be thinned properly. Please let us hear how it goes for you!

We learn from eachother.

Stay on here and Good Luck from Kerstin in Stockholm

[daisy82]

Thankyou Kerstin.

As you and Mary both suggested I looked on this site's list of specialists; unfortunately none are based at my current haemo department (Royal Shrewsbury Hospital). My symptoms got really bad about 18 months ago when I missed my blood donor session so my gp tested me for anaemia which is when my high RBC was discovered. I was diagnosed with polycythaemia but with that condition platelets are generally high and mine are extremely low. I will speak to my lovely gp and maybe try to get a referral to someone in Birmingham where there are specialists.

Hope everyone is well today, happy weekend!

[smartboredgirL]

Your daughter should definitely get screened.

Also, I have had several heavy periods. My hemotologist did some labs and I was extremely anemic.

It would be a good idea for you to have comprehensive labs done.