Hi, my name is Jane. I was diagnosed with CREST in 2010, although have had major symptoms since 2000. Last year I was diagnosed with Pulmonary Fibrosis, Pulmonary Hypertension and Diabetes. Metformin and Mycophenolate caused sickness and extreme fatigue / depression and I spent nearly all of last year in bed or on my sofa feeling dreadful. Almost all medication causes gallbladder, liver and / or spleen infections and I have stopped taking all. My hands are like very fat sausages, skin thickening, not fluid. I have been told there is no joint issues, JUST skin thickening. I have extreme Raynauds, some deep pitting at the moment but thankfully no ulcers. Also Hyperkerotosis which also causes pain. My right hand is curled badly, my index and middle fingers do not bend. I have pain in my hands and feet all the time. Cutting food causes ulcers on my knuckles. My left hip is very very stiff, I cannot bend forward, have trouble walking, my left leg regularly just gives out. My oxygen exchange dropped from 89% to 60% in just three years, steps/stairs and slopes make me very breathless and at times near the point of collapse. I also have IBS, a Hiatus Hernia, Sjorgrens Syndrome and Telangectasia. I have days when I cannot shower, cannot hold a hairdryer, house work is all but impossible, as is ironing. My house is a mess and I hate it. I cannot touch type any more and have not been to work for 15 months – fatigue, inability to type, or get up the stairs to my desk and problems with the one hour drive to work all added to my inability to get there.
My Rheumatic Consultant, Heart and Lung Consultants are all based in Bath (a 3 hour drive), so visits are limited. They are all very good and all tell me my problems are MILD. Funny thing is they don’t feel mild when all put together. Last August it was suggested I attend a Pain Management Clinic at my main hospital (one hour drive). It took until December to be accepted and two weeks ago before my first appointment. After two sessions of acupuncture I was in unbelievable pain and have had to stop. Yesterday I attended a Pain Management Physio session. I had a 30 minute instruction on how pain is caused, pain receptors etc and was then told the best thing to do would be to go for long walks or go out dancing with friends. (Where does a 52 year old breathless diabetic with walking stick and two wrist braces go clubbing??). Another suggestion was to stop focussing on my pain and read a book!!
I am so grateful that my Husband is very supportive, especially when confronted with health experts who do not seem to listen to my concerns and problems. I am awaiting a sleep test, I wake up gasping for breath and am also have a future appointment to see a Diabetic Consultant as I cannot tolerate any diabetic meds. I feel very alone and, as in the case yesterday, made to feel that I am somehow doing all these things to myself. Is there anyone out there who understands?