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???
Thank you Susan. I guess I was just fed up with not knowing what to do, who to trust, who to believe - my one constant is my actual condition - that only changes by worsening, old age I guess. There seems to be no sense in the way doctors change their minds without any visible clues. Too hard for me to guess what is going though their minds. I will not stop taking medication, nor give up, I cannot, I am totally unable to function without help! It just seems so haphazard, bizarre, that a doctor would not support a plan of action, simply tell me that he "never supports anyone else's" plans or diagnoses, that he always does something else - what? What for, what if they are right?
The Pain Management clinic was amazing - I learned about TENS machines (and have now bought one), did many different kinds of relaxation, Tai Chi (in my wheelchair), exercises in the gym (the Physio wrote out personal exercise plans for each of us); we did hydrotherapy, visited a Life/Tech place that had numerous aids for all sorts of disability, had lessons in ACT and CBT from the Psychologist as well as one-to-one time, had sessions with Dieticians, Occupational Therapists, and Pain Specialists. Cooking lessons, movement lessons, reaching-for-stuff lessons, interactive sessions,we were given lots of written information, lots of internet hints, we came away with a personalised "living the best we can" plan. Each day was very structured, with lots of relaxation and information intertwined, it was so, so, very helpful and supportive. And not least, great fun! We were told to laugh as much as possible, to seek the positive, to work with what we have - there were a mix of pain problems there; injury, illness, genetic, and so on.
The group as a whole was very supportive and friendly, we all keep in touch (so far); the experience was just amazing. How the staff at the hospital treated us was just wonderful I came away feeling human again, feeling as if I counted for something, that I was not just 'finished up'. I have private health cover (here in Australia) without which I could never have afforded the program, if anyone is considering it, I would say, give it a go. I have not named the hospital but will if allowed?December 26, 2011 - 5:40pm
The pain management clinic at St Vincent's Hospital, Kangaroo Point, Brisbane, Qld. Not much use to most of EmpowHer, I guess most of you are USA?January 4, 2012 - 2:59am