Well I saw my new rheumy Wednesday, which I also blogged about in my fibromyalgia blog, "'Fibro and CFS don't occur together' Whaaat???"
I was concerned with the doctor told me she didn't believe that FMS and CFS can occur in the same person. I was a bit more concerned when I told her I have EDS and upon asking my type, she smiled and said "Oh me just call that hypermobility around here." The unspoken, yet obvious words were "it's no big deal." Yes, it is a big deal to me. I think my EDS deserves a doctor to consider it when treating me. I think my EDS deserves a doctor telling me about it. Instead I was told by the geneticist that I have hypermobility, the least serious type...and that's it. I realize that V-EDS is the worst and it shouldn't even exist in a perfect world. No one should ever have to die from it again.
I still think that my H-EDS is something other than "no big deal." I want to scream that it sure feels like a big deal to me, dumbo! (I'm not sure where "dumbo" came in, it just seems to go good at the end of that sentence.) I want to be paid attention to. I am not a hypochondriac, I have real conditions. I am not a hysterical woman. I am not being taken seriously and I'm angry about it.
She is the third rheumy I've tried and my fiance thinks we should just stay with this one because at least she is giving me the proper medication for my fibro and a script for physical therapy. But what about my EDS? It isn't as severe as a lot of people's. I am in constant pain (and on constant medication for pain) but I don't think I've dislocated a large joint, only small ones and subluxated large ones. So I know it could be a lot worse. I also know as I've gotten older it has gotten much worse. I don't know what to do. I am exhausting the doctor supply! LOL I really am at a point where I just don't know what to do.
Amy's Journey with...
Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness Seizures (Complex Partial Seizures) ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I ~ Migraines ~ Obsessive Compulsive Disorder ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Painful Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis (Autoimmune Hypothyroidism) ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches