I'm 53 years old now. All these years fighting with Dr's & being diagnosed with Fibromyalgia, simple Arthritis etc. I've been accused of being a drug seeker, a hypocondriac, bipolar, depressed, should I say more??? From age 48 yrs till now, I have progressively gotten worse in regards to pain. It took all 53 yrs to have xrays, MRI's etc to show signs that I wasn't imagining my pain. All was going well till August of last year. I was using a cane, I was able to carry on with daily chores, I accepted my fate with having a disability. Then my hip began to cause me many issues of pain & stiffness. I had x rays done, I hooked up with a good rheumatologist, he sent me to a Genecist in Dec of last yr. He noticed my weight loss, my transparent skin, loose skin on my upper arms, my deformed elbows. It explained my many injuries over the years, the scolosis in my early yrs, all the injuries without even trying. Now @ 53 I have Severe Degenerative Disc Disease, Severe Osteo Arthritis in my back, pelvis, rt hip, left hip, both shoulders, left knee, left foot etc. I have fought for a right hip replacement with an orthopedic surgeon who said lose weight ( did that) I will do your hip replacement. Last time I saw him in Dec of last year, he said once again, its your back! Get your back fixed first them I will do A Hip replacement. I was so aggravated cus I had lost 100 lbs with promise to have the hip replacement & the surgeon was making excuses as to why he wouldn't do it!!! Understand my frustration level ppl! I was diagnosed with Type 3 in Dec...What a relief that was. So... I was referred to a new Ortopedic surgeon & saw him this week, Wed July 16. He went over my files & said that I absolutely need a hip replacement & its not a simple replacement. My pelvis from the arthritis has become deformed. I'm here living in a small town with not a huge selection of Specialists. I Thank God that someone actually is listening to me, however there is a 4-6mth waiting list for this surgeon to preform my hip replacement ! I have no Dr to prescribe pain medications so I suffer. There are strict guidelines here in Canada in regards to pain medications. It really sucks cus many Drs are afraid to prescribe pain meds.
I don't have dislocations, I just injure myself really easily all my life. I have poor wound healing, many scars that are wide. I have diviticulitis, stomach issues, no heart problems.
I am thankful that I finally have a proper diagnosis. However, it changes nothing. Not everyone believes I have this cus on the outside they see nothing. All they hear is bitch & moan. Then they ignore me or are stumped @ what to say to me.
Anyhow, what am I to expect for my future? Am I correct in how I feel right now? Is there anyone out there going through the same as myself???
Please let me know how Ehlers Danlos 3 has affected your life...
Thanks for listening!