Connective Tissue Disorder/lupus?
Question:
I was told that I had Lupus at one point and now another rhumatologist has said that it is a type of connective tissue disorder. I really don't understand the difference and would like advice about lifestyle changes or anything to give me relief without adding any more meds. I take too many already. I need to feel better for the sake of my children.
Thanks!
Answers:
I have all of your problems also.I have had 2 positive anas also and alot of negative blood tests also.They do know you have a connective tissue disorder.they just cant pinpoint it.If you look at any books on this subject,you will see how many autoimmune illnesses there are,and all of the symptoms mimic each other.The fact that you have Raynauds,which I also do,Raynauds usually only is associated with about 4 autoimmune problems. I am not a doctor and I know how frustrating this is because you cant get a solid answer of what you have.On 1 of my blood tests that was positive and I always got copies it showed markers for what I might eventually get,or was prone too.I cant diagnose you but I can tell you all of these symptoms are painful and some are just plain annoying to have to live with on a daily basis.Anyone with autoimmune disease fights with reoccuring,bladder,sinus,yeast... even eye infections.I wish I knew the meds you were on.I can still direct you on other things to help you feel somewhat better,Obviously Ibuprofen is better than tylenol because it helps inflammation,Everyday warm showers,Eye drops,have a good pair of mittens for the raynauds,when you have flare up with raynauds run your hands under warm water.Try sugarfree candy or gum to suck on for your dry mouth.Soak in warm tub for muscle aches same reason for the showers.Try physical therapy in water is best,but if you can get massages,or the tens unit on you that would be good too.Drink lots of filtered water.Take specific vitamins.Accupuncture I highly recommend it.Now these are the things you can do just to get you through another day.As far as western medicine,I take norvasc for the raynauds its a blood pressure pill,it opens up the vessels in your fingers ,I take a pill that does help make saliva,and very important that you take an anti inflammotory.Sounds to me like you should look into a illness called Sgoj erns it sounds like you have alot of those symptoms but they can be caused from meds. too Last thing I know you say you have children but stay away from as much stress as possible stress flares all of this up.Learn good ways of coping and most of all you have to fight it and do what is necessary everyday to feel comfortable.Take Care
Well, I have both Lupus and APS. My ANAs in the beginning would go from positive to negative. But reading your list, you sound like you have a lot of symptoms that match with APS and would give you the low positive ANAs and is also an autoimmune disease. Ask them to test you for APS and please check out the website below.
Also if they said you do have Lupus...pregnancy can be a little harder on you.
People with antiphospholipid antibodies have an increased risk of developing one or more of the following problems:
Blood clots in veins, particularly deep vein thrombosis (DVT)
Blood clots that go to the lungs (pulmonary embolism)
Blood clots in arteries
Miscarriages – these can occur at any stage of pregnancy but are most common in the late first trimester or early second trimester
Pre-eclampsia, eclampsia, fetal growth retardation, premature delivery
Heart attacks, angina
Strokes
Brief stroke-like episodes called transient ischemic attacks (TIAs), for example, loss of vision
Decreased levels of platelets (small blood cells involved in blood clotting)
Heart valve problems, sometimes requiring valve surgery or valve replacement
Persistent or transient blotchy, lacy bluish rash (called livedo reticularis) (part of Raynauds)
Skin ulcers, most commonly on the legs or fee
“Catastrophic” APS – a very rare, life-threatening syndrome in which clots form in small blood vessels of multiple organs (such as heart, lungs, brain, kidneys)
Other features that might be associated with antiphospholipid antibodies include:
Problems with thinking clearly (loss of concentration, difficulty with reading comprehension and performing calculations, memory loss)
Neurological problems similar to multiple sclerosis.
Migraine headaches, sometimes with visual disturbances
Other neurological symptoms including episodes of partial or total vision loss, dizziness, vertigo, loss of balance, seizures, and other abnormal movements
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