For the last 3 yrs I'm getting constant sore throat always after I do too much (this could simply be just getting dressed). I'm just exhausted from do the bare minimum and then get a sore throat, which tells me I've reached my limit. Its not reflux or anything because I've already ruled that out. My bloods all look ok.
Is this a common symptom of aps or should I maybe looking into something else.
Go to your doctor! I had reoccurring sore throats from hell. It was chronic tonsillitis!
With good wishes,
Ros
I have been to the doctors but they don't know why. Originally they did test for lupus which was negative and that's how I ended up down the aps road.
There isn’t a specific test for SLE (systemic lupus erythematosus). If you feel there’s a problem then you should pursue this until someone can diagnose you. I am confused how the doctor goes from SLE to APS - unless you mean the lupus anticoagulant test which is not a test for SLE but a specific clotting test to help diagnose APS or Hughes Syndrome.
You have reoccurring sore throats, you have fatigue and APS. I would try and get a referral to see an expert in autoimmune diseases because your symptoms are not normal. Just because the blood tests don’t show anything doesn’t mean there’s not a problem. It just means that the tests given don’t show anything!
Like you, fatigue is a dreadful symptom, so don’t give up! Find a doctor who will take you seriously. I did and it was Dr Hughes.
With good wishes,
Ros
If only I could see Dr Hughes that would be great!Not sure what test it was they did for lupus, but they said if u get tested for lupus they also test you for aps which the beta 2 glycoprotein kept coming back positive for me.
I'll have to ask them what test they did for lupus
Weirdly when the sore throat started going back 3 yrs ago is when I started having seizures. It's like the sore throat is a warning if you keep pushing anymore I'll have a seizure or what looks like some movement disorder.
If I can get some money together I need to do my own investigation as my docs don't seem to no much about anything I got being pots, aps etc
Thanks for getting back to me xx
It’s so wrong having to pay to see a doctor! The London Lupus Centre is where I would recommend to see Dr David D’Cruz.
He took over from Dr Hughes at St Thomas when Dr Hughes “retired”. After seeing junior doctors, I insisted on seeing him, given appointments were 18 months apart! He took one look at my results, said there’s something going on, ordered specialized tests of the whole range of immunoglobulins and sent me to a haematologist.
Your symptoms have nothing to do with my symptoms: it’s just an example.
My point is: if you feel your body is telling you something is wrong, find a doctor who will take you seriously.
Be well!
Ros
He is one of the docs I have in mind. My rheumatologist has never even asked me "so what are your symptoms" you would think he would ask. You need to see someone who has taken an interest in aps as well I suppose as most rheumatologist do a bit of everything, so know a little about a lot.
I hope you see him as soon as you possibly can!
You've got me thinking, I am actually wondering whether they have tested me for lupus with the lupus anticoagulation test! And that is how aps come about in the 1st place as I was never getting tested for aps. Wouldn't the laboratory know not to test for lupus that way?
The lupus anticoagulant test is a very confusing name - to doctors and patients. It's a very complicated clotting test for people suspected of "sticky blood" or APS. It's not a test for SLE ie systemic lupus erythematosus or "lupus."
There isn't a specific test for SLE, which is why it's hard to diagnose, unless the doctor is actively looking for it. For example, a positive ANA is one test - but there are healthy adults with a positive ANA and so people with SLE are ANA negative (like me)! You see what I mean?
What is usual is that the rheumatologist knows there's an autoimmune problem but doesn't know quite what. The patient is treated with say, for example, corticosteroids and the rheumie will watch and wait before giving a diagnosis. This is because the worst scenario is to make a diagnosis and then admit, it's wrong. This is why many patients don't get a formal diagnosis or told they have some form of Connective Tissue Disease or Unknown CTD etc or even "Mixed Connected Connective Tissue Disease" if there is an "overlap" as is with me (dermatomyositis/SLE).
The label is unimportant. What's important is the treatment. My advice: always ask your doctor what they are looking for.
As I said, the "lupus anticoagulant" test is a very confusing name because it is NOT a test for SLE!
I hope I haven't confused you!
Ros
Just found a pic of the things the doc ticked on the blood form. He ticked autoab and marked lupus next to it. So they must have tested properly assuming ana test
I can see the confusion with the lupus anticoagulation test. I suppose I'll have to ask at some point
Thanks for replying
I think you should!
I am sorry that you are so depleted. I too experience that utter exhaustion. I too get a sore throat and feel shaky when I have done too much. I olden think ‘Oh no, I’m going to wake up with flu tomorrow.’ But after a rest then it’s all gone. My brother has RA and he feels the same regularly. My mother has no diagnosed auto immune but she too has the same thing.
Not a very helpful reply but other people do experience it some with autoimmune diseases and some without.
Always worth a check with your GP though. Good luck xx
That's exactly what happens with me, I rest and the sore throat goes. It's so frustrating isn't it getting so exhausted from doing the bare minimum.I often think I'm coming down with something and think how do I still let it trick me
I suppose having an autoimmune disease would cause a sore throat because it's an immune response when your body starts attacking itself
Will go back to doctors though
Thanks for the reply and take care xx
What you singled out is accurate: autoimmune conditions have unspecific symptoms such sore throat’s & fatigue! Sadly, some doctors conclude “it’s all in the mind” because they don’t know!
Be well!
Ros
When I was a child, I too had recurring sore throats, and when strep tests came back negative, my mother was told it was all in my head. Finally! When in college, I had a number of health problems all at once, pneumonia, anaphylactic shock from penicillin, swollen glands all over my body and the doctors at my uni [ Vanderbilt) asked detailed questions of me and my at home doctor. They contacted my pgysician father ( who I had not seen since age 4) and I flew out to Georgia where my Father had me evaluated at Emory Clinic. I returned home ( on sick leave from uni) and my local doc made the bizarre case that I had mono ( 7th diagosis within 14 years) and I should be treated with oral steroids. Seemed nutty to me that an infection should be treated with steroids,.. but I gave it a try and... It worked! Fatigue went away. No sore throat! My gland sizes retuned to normal! Only years later, in a conversation with my now deceased local doc's son, did I discover that all the Emory docs as well as Father, had agreed I had lupus. They did not tell my Mother because she fervently believed that lupus was a made up disease. To this day, many autoimmune disease are over looked due to the once-prevalent medical notion that some hypochondriac patients are manufacturing their symptoms due to some untreated mental problem. My experience tells me that recurrent sore throats is a symptom of an autoimmune issue. My spleen was once so swollen that I came this close (🤏) to having it removed. A dose of steroids and a gluten free diet and now all is normal. ( Of course, I now have APS, but I remain symptom free with an INR as low as 1.5 and a gluten free diet.) Keep asking questions. Stay strong!
That’s an amazing story. Thank you for sharing. It must have been so hard for you with no diagnosis.
My mum was told when I was about 13 ‘it’s all in her mind’ that stigma has stayed with me and even now at 56 I don’t say much about my symptoms in case people don’t believe me. Thank god mum (and dad) believed me and fought for me. I have Lupus, Sjogrens and APS. My brother has RA and my father Scleroderma.
Keep well 💋 x
The back story is that Father had lupus and that was one of a number of factors that lead to separation and divorce. Because... My Father went to college on the GI Bill. But only 4years were covered by that bill. And Dad needed to finish his Bachelors at UK and then an MD in only 4 years ( he and Mom already has 1child.) So Mom stepped in for the first 2 years. Sometimes Gene Cooper was6'2" with a crew cut. Sometimes Gene Cooper was 5'2" with long curly hair. And Mother was taught that autoimmune diseases- particularly lupus -- is a hypochondriac ailment. I did some research and browsed through one of Dad's ( and Mom's )med school textbooks and found that as of 1945, lupus was not " real" ailment and patients with the following symptoms needed referral to psych docs. Father had lupus. He self treated for years by avoiding the sun and eating a lot of veggies. But Mom concluded that her husband wasa nut job. And no one who knew that back story wanted Motherto treat me with the same condemnation.
Hi, do get your throat checked out, my daughter had this for years with her Lupus and Hughes Syndrome/APS, however it disappeared with the correct levels of Iron, B12 and vitamin D, also adding probiotics into her diet, (don't start any supplement without checking with GP/specialist) etc. MaryF
Why is my body sore to touch
Trying to get to grips with APS
Up to date with APS/THYROID/LUMPS on the hand etc 
Recently Diagnosed with APS and a little confused.
This is my poem, in answer to the APS one. It is about TIA's (mini strokes)
