Welcome fellow sufferers! I first
noticed undiagnosed connective tissue disorder affecting my whole body 20 years ago, sometimes unable to get out of bed for 2 - 3 months. Cortisone injections helped inflammation & swelling but could not tolerate methyltrexate and the other drugs I was given . I was on such high doses of oral cortisone that I developed Cushing Syndtome and was slowly taken off that and was just on analgaesia. It has slowly worsened over time & a few areas of my body are never in remission eg: TMJ joints and intercostal cartlege.Now I also have inflammatory Osteoporosis-Arthritis particularly of my wrists, hands & fingers and my feet. I also have a mild psoriasis which is slowly getting worse to add to the list. When I am really bad I get ulcers+++ both in my mouth and in my genital area.
My hips and intra trovhentrric area are often swollen, inflamed and filled with fluid. I go as long as I can in between cortisone injections.
Following a fall from 2 stories high my whole body was affected and I was a year in bed and had 6 major surgeries and have a stent in my groin as I had clotting right throughout my body so am on warfarin for life. My teeth started causing serious problems and I had been compulsively been eating ice for 2 years. Most Drs & Nurses are unaware that a compulsion for ice, clay or sand means you have ferritin and iron levels and haemaglobin levels that are rock bottom.!my daughter found this out by looking it up on the internet and so asked the Dr for tests ASAP then had iron infusions. I have had 2 lots of infusions in 10 months and can no longer take nurafin or aspirin again. My recent test was OK. My teeth have suffered badly and are gradually becoming loose and my two middle top ones have fallen completely out! I had to have titanium implants & grafts over a 9 month period.’This is a protracted and expensive surgeryI know have mild psoriasis which is gradually getting worse.
Won’t it be nice when these things can be treated properly and then the disease process gradually reversed as it is with some conditions already!
Most Rheumos I have seen are useless in the face of this as they can’t just do a blood test or scan and say you have such & such!
All the best to my fellow sufferers who sometimes get labeled with a disease out of dispair only to have it changed or left as the Dr is not 100% sure.