Ive been diagnosed with APS about the yrs ago. Lately Ive experienced a bloated abdomen. It starts under my ribcage and causes alot of discomfort. There is pain deep inside right below my sternum. I dont eat mu
ch...no appetite. Also Im very tired and have no endurance, but I just chalk that up to the APS. Im a bit concerned though that it could be my heart. My late Mother had an aortic valve replacement...so Im wondering if I should request a cardiology appointment.
Hi and welcome. Where are you located? Do you have a designated specialist looking after you, who understands fully Hughes Syndrome/APS? We can't diagnose what your particular problem is, a lot of us get gut issues with this disease and ditch gluten, but I will stress here that any new pain or symptom needs investigation with your main Hughes Syndrome/APS specialist and your GP. It is advisable to check your thyroid function, plus your levels of D, B12 and Iron. MaryF
Hi and most welcome to our friendly site!
In which city do you live?
As MaryF already said all bloodtests should be taken and you must have a Doctor well versed in our illness. He or she must have knowledge of treating patients with this illness like other autoimmun illnesses. It is usually a Rheumatologist or a Hematologist. This is very important for your future treatment.
I have lung/heart-issues with HS/APS and I live in Stockholm/Sweden. See to it that your bloodpressure is normal and I have done several Ecocardiogrphys with doppler as I have a bit high Pulmonary Hypertension and two leaking heartvalves. I feel ok with good Specialists and I am today well and stable anticoagulated with Warfarin.
I suggest you read "Sticky Blood Explained" by Kay Thackray. She has got our illness herself and writes about the different symptoms and she also have heart-issues with it. There are two books about APS and I bought them here in pocket.
Best wishes and hope you stay with us here.
Kerstin in Stockholm
The following is a suggestion if and after you consukt with your APSDoctor:
After going to Cleveland Clinic Functional Medicine and trying out their suggested dietary changes with pro and pre biotics, I have been amazed at the effect this has had on both my gut and my overall health. You might have a gut biome imbalance, which has little to do with APS and which might be helped by a consultation with a functional med doc or a nutritionist who has been educated about gut biome ( this is fairly recent med discoveries.)
Nadiart, welcome! Please go to your doctor and explain your symptoms.
With good wishes,
Ros
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