I am Ursula, 83 years old. i had a hip replacement in 2004 on the right side, which i call my good side. the left side is affected by thalamic pain syndrome, also referred to as dejerine roussy syndrome [ed.: also called Central Pain Syndrome]. even many neurologists are not familiar with the syndrome. it is here to stay with me until i die and was acquired when i was 63, the after effects from a very mild thalamic stroke. all the pills i take only take the edge off the pain. there is no known cure. it gets worse, as the years go by, and it also affects wider areas on the affected side. the early focus of mine was the left axilla and the surrounding area, spreading on select areas down the arm and hand, and slowly creeping down the left side into the leg and down.
my neurologist gives me most of the pills i ask for. i would have been lost through the years if it had not been for the cps alliance correspondence, from where i got most of my ideas of what works and what doesn’t. i am also a “googler” and research the stuff i take.
in addition to the left hip, my left knee is bothering me quite severely. i hope I can relieve this without a knee replacement, which i would not consider at this time.
at the front is gabapentin, which i have slowly titrated to 3,900 mg per day. it has no upper limit.
- i take one lotrel 5/10 for my bp and some cinnamon in the a.m.
- i take 1-0.5 mg alprasolam for sleep in the evening
- i take 2 NORCOS a day – they do not offer much pain relief.
- i take one baby aspirin daily.
i have been mostly housebound. i read and write a lot. i have written a lot of poetry. above all, i have tried to put the suffering of cps into rhyme.
to come to an understanding of the often misdiagnosed syndrome, i have written poems about this suffering and the way it affects our lives. if you ever have time and, of course, interest, you actually might enjoy the poems giving a broad understanding of what ails us.