I simply don't know what to do anymore
My feet have hurt all my life. My arms, wrists, hand and thumbs hurt. My legs ache and feel as if hot wires are being pulled through them, my whole body seems to have hot sharp wires being pulled through it from time to time. I cannot kneel because my knees are so bad. I cannot get up if I fall. I cannot walk far, only a few steps, and am now in a Powered Wheelchair. My jaws ache. My back hurts, I have scoliosis and damage to the vertebrae. My neck is stiff and will not turn far to the right, can turn father left. I am going deaf (slightly) in both ears, which is attributed to the Fibromyalgia. I am diagnosed with: Carpal Tunnel Syndrome, Raynaud's Syndrome, Osteo Arthritis in spine, hips, hands, knees, Fibromyalgia, Chronic Pain, Chronic Fatigue, Irritable Bowel, High Blood Pressure, Reflux Oesophagitis, Rheumatoid Arthritis, Reflex Sympathetic Dystrophy, Tenosynovitis, Chronic Dry Eyes, Asthma, Chronic Dry Mouth and ulcers.
Now the Rheumatologist has written to my GP saying that he now believes that I do not have Rheumatoid Arthritis, instead he believes that it is Psoriatic Arthritis. I do have slightly raised Rheumatoid Factor in my blood, and also raised markers for Thyroid Hormones, whatever that means.
I do not have Psoriasis anywhere at all. I am taking a huge amount of medication. Some of which is really helpful, or has been, I do not know if I am getting worse, or my body is adapting to the medication. Just recently spend two weeks as an inpatient at a pain-management clinic, which was very very good, very helpful.
But now - what? My GP is bewildered by the about-face of the Rheumatologist, I am just very confused. The Pain Specialist at the Hospital was dismissive of the Rheumatologist's change of terminology, saying that it is semantic, I have some sort of Inflammatory Arthritis, the name doesn't really matter ---
But I am now at a stone wall. any suggestions? anything???