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Sticky Blood-Hughes Syndrome Support
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I have a couple of questions from reading your posts. I have developed some problems lately and wondered if they are connected to Hughes. Sleep is a problem and I attribute this to age but I now have excessive tiredness. I have actually dropped off to sleep standing up! I can't read or even watch TV without drifting off a dozen times or so. This is very worrying to me because along with that my memory is becoming affected. I feel as if I am going crazy! Oh yes I have extremely bad arthritis which is somewhat a mystery to everyone including my rheumatologist. I present rheumatoid but tested negative for it. In fact I have had every test available the answer is still no so they had to guess osteoarthritis. I wear a pain patch plus take pain meds by mouth. Any suggestions would be greatly appreciated, thanks.

3 Replies

Hi, other than your usual Hughes Syndrome/APS tests, did your Vitamin D, B12 and Iron get tested? Also very importantly your Thyroid, and I will say the the doctors and consultants usually only do the TSH, which is highly unreliable, I do a whole panel of them and pay for them privately which revealed I had a serious thyroid problem. MaryF


Because of strong pain meds it's possible that you have developed sleep apnea. What you are describing fits that compleatly. You may well feel you are sleeping but actually you may have your sleep interrupted constantly many many times per night. This causes tiredness during the day and will lead to memory issues too. It will also affect exercise intolerance.

Please see your Dr as soon as possible and ask to be assessed for this. It's very important if you are suffering from it that it is diagnosed and treated.


As u know Hughes is an autoimmune disease. Well, it's my understanding when one AID turns up it's often the case that it invites its cousins along too.

Hughes, Rheumatoid A, Sjogrens S, Lupus, Hashimoto's, etc. Are cousins!

It sounds like another auto immune may have joined the party.

Many of these can throw + and - blood test results. After years and years of being positive for Lupus & Sjogrens I've been having negative results recently??? My Rheumie just says "we know you have them let's not worry what the bloods say and treat the symptoms."

It is also the case that many people with Autoimmune Diseases are predisposed (more likely) to develope Fibromyalgia.

I don't want to sound pessimistic but maybe you need to delve a little deeper.

Good luck 💋


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